Clonidine. Back to the Lower Dose.

I had to go down to a lower dose of Clonidine since the higher dose was making me moody and affecting my motivation. The higher dose wasn't having much of an affect on my tics anyway, so no loss there. The lower dose helps me sleep at night, but that's about it. Finding out I am this sensitive to medication isn't great news, but at least I know now and at least I tried. Also it does help me sleep which is a win considering before I was on the medication it would take me about three hours some nights to fall asleep because of my tics. So I get some benefit at night from the medication which is better than nothing. My neuro suggested trying another medication, Guanficine, otherwise known as Intuniv. But knowing how sensitive I am to medication, I'm not going to risk it. My mom agrees; my grades are just to important right now to experiment with my brain chemistry. I know how to deal with my tics, but I don't know how to deal with all these side effects when the medication doesn't even help me tics in the first place. I'll probably stay on the lower dose of Clonidine just for the sleep benefits, but I may too go off of even that if my mood doesn't improve. We'll see.

Housing for Junior Year

So I know my past couple of posts have been on the more negative side, talking about how my tics have been bad so far this semester and how i'm fed up with it. So I decided it's time for a more positive post! Anyway, a little while ago (the summer after my Freshman year of college) I wrote about my friend Ivy. For those of you who didn't read that post, I'll summarize it here. Basically, my freshman year I started two year freshman program about the mind and brain. It's basically an intro program for my major. In that class, I ticced a lot, just like I did in every other class. Freshman year I didn't really tell my classes about my TS because I was too afraid to. So once people noticed something was wrong, they usually tended to take one of two positions. They either stared at me in a very obvious way or ignored me so as not to get caught staring. However, in my mind brain program there was this one girl who kept making it a point to sit next to me every day. I didn't really notice though until one day she decided to start talking to me. The first time she talked to me I thought she was talking to someone else, so the first time she said Hi to me and tried talking to me I pretty much ignored her because I thought she was talking to someone else lol! Then she kept persisting and I realized she was talking to me and I responded and started talking to her as well.

Since Freshmen year, we've become friends. We've met up to each lunch and dinner together quite a few times. We've had other classes together, considering we're the same major. And we've kept in touch, at some points more than others, but none the less, we've remained friends. 

Last summer I told her briefly about my TS and about camp twitch and shout and she told me she has an older brother who has autism and is non-verbal. I know a lot about autism since i've worked with autistic children quite a lot as a result of my senior project with a class of high functioning autistic middle school students and my mom's job at a special school. In fact, i'm soon going to start helping out with their Friday after school social skills group this semester! 

Anyway, back to the point of this post. Ivy texted me about a week ago asking me if I would want to room with her and her suite-mate next year. In the text she said that she thinks I would be a really nice person to live with and rooming together would work really well! My two other suite mates from this year who i'm very close to and I all want to stay together, so we've decided on a preliminary plan of having the 5 of us (Ivy, her suitemate, me and my two suitemates) room together in an on campus apartment! I'm very excited about this idea and can't wait to room with Ivy and her friend. 

We're going to meet on Sunday morning as a group so that the people in the group who haven't met yet can meet and so we can discuss things in person. I think it will be really great to live with Ivy, her friend, and my two other friends. I think we'll all get along really well and in particular i'm excited to get even closer with Ivy. 

The only thing i'm worried about though is that Ivy has never seen my tics to their full extent. I worry that she will have a different opinion of me once she sees my tics in full force. But then I just think how my good friends who I have now have all seen my tics in full force. They all at one point had never met a person with Tourette's and now they just ignore my tics and very them as something that's just normal. I think if anyone would be the kind of person to accept my tics, it would be Ivy. Even though i'm worried about it, I know in reality that Ivy and her friend will both get used to my tics fairly quickly, just like everyone else has. And once they get used to my tics, they will see me for who I am and not for my tics. They will see my tics as just one small part of me, and get to know the person I really am. Even though I don't yet know Ivy's roommate, I trust that she is a good and accepting person. I could never imagine Ivy being friends with anyone who is not this kind of person. I think this will only bring new friendships and more support into my life. That I am exited for :) 

A Rough Day of Tics

Just when I thought my new dose of tic medication was working, I have a day of very bad tics. My tics have been bad all day pretty much and now i'm having a pretty rough night. I'm hanging in there for now, but I think i'm probably going to miss my first class in the morning in hopes that that will give me enough recovery time to attend my second class of the day. Today was one of those days where I feel trapped in a body that I can't control. Hopefully tomorrow will be a better day.

Trying 1 and a half of a pill of Clonidine

Called my neurologist early this morning as soon as the office opened to talk about the side effects that made my day miserable yesterday. Got the okay not to take the extra dose in the morning but to instead take 1 and a half doses at night. I had a much better day today! Only a little bit of drowsiness and no "sick all over" feeling or muscle weakness/pain. Thank goodness! We'll see how it goes talking the 1 and a half dose tonight.

Upping my Clonidine dose...not the best decision

My neurologist and I decided to up my dose of clonidine because even though it was helping me sleep, it wasn't having any effects on my tics during the day. So yesterday and today I took half of an extra dose in the morning. I am having so many side effects and I don't really understand why half more of a dose would do this to me. I'm tired, apathetic towards seemingly everything, don't want to talk to anyone or do anything, and I've been experiencing muscle pain and weakness as well as lightheaded upon standing. I am going to call tomorrow to see how I can get off of this extra dose ASAP. I'm supposed to be having fun today since today is bid day for my sorority, but instead I'm sitting by myself hoping no one tries to talk to me....

Camp Twitch and Shout 2014 Summer Applications for Counselors and Campers are Up!

Camp Twitch and Shout -- One of the few places where it's cool to have Tourette's Syndrome! One of the only places where you're the odd one out if you don't tic. It's an experience beyond words. Sign up as a camper or a counselor and I promise you, it will be a life changing experience. So glad my counselor application is in for this summer! http://camptwitchandshout.org/

A bad week of tics and telling more people about Tourette's

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette's to them all makes my tics so bad! Right now just about everything is setting them off, including the awful cold I have....perfect timing. I'm also supposed to be doing sorority recruitment which is another thing that's making my tics worse. Today though with my cold, my tics, the total over stimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like i'm missing out, but I really didn't have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.

Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.

Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.

I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.