Friday, November 29, 2013

My First Week on Clonidine

Well it's been a little bit since I've given an update so I figured it was update time! I've now been on the pill form Clonidine for 1 full week. For the first week I was just on half of a pill and I switched to taking the full pill last night. So now I'll be taking the full pill, I probably should check on how many mg that is, at night 30 minutes before bed. So far its really been helping me sleep. Most nights it takes me at least an hour if not two or three hours to full asleep because of my tics. I am just moving and thrashing about so much in bed usually that I can't fall asleep. Nighttime is a huge tic trigger for me. Now though for the past week on this medication its never taken me more than 15 minutes to fall asleep! I love it!

It's so nice not having to spend three hours ticcing in bed before I finally fall asleep from pure exhaustion. It's so nice not having to dread bedtime. I can once again enjoy sleep!

The medicine isn't really having an effect on my tics during the day yet, but it is making me tired enough at bedtime to make my tics settle down and allow me to go to bed.

My neurologist said it would probably be at least a month before the medicine had much impact on my daytime tics, so for now I'm just taking the Clonidine and enjoying my new ability to fall asleep quickly and have good restful sleep.

I have had one side effect which was an issue with my digestive system/stomach, but I can take another medication to relieve that side effect so that it isn't a problem. Besides that I haven't had any really bad side effects or anything yet and I hope it stays that way so I can stay on this medicine and keep getting the sleep benefits :)

Wednesday, November 20, 2013

Trying out Clonidine for my Tics!

So my Neurologist appointment today went really well! Everyone was so nice. I felt very much taken care of and like everyone was really paying attention to my questions, concerns, etc. The first neurologist who was studying with my main neurologist came in first with a medical student. She was so kind and warm. She was also genuinely curious and interested in me as a patient. She asked me questions, listened to me, and took the opportunity to learn more about Tourette's. She wanted to hear all about what my tics are, and asked me lots of questions like what my tics are, what they are triggered by, if they ever hurt me or cause soreness, etc. She was so nice about it, telling the med student when it was time for me to list my tics "This is the most interesting part of the interview because talking about it brings all the tics out, so feel free to tic away" like it was the most normal thing in the world! I did end up ticcing quite a fair amount in the office but she made me feel so comfortable about it that it was no big deal.

Then when she had to do the neurological exam part she said she would have to look in my eyes but not to worry about blinking. So when I did my blinking tic while she was looking in my eyes she nodded her head and kindly waited and then looked at my eyes again with her flashlight.

Then my main neurologist came in with his nurse as well. So there were 4 medical professionals standing around me. It made me feel a bit overwhelmed but also like they all cared about me as a patient enough to be there.

So my neurologist listened to how I was particularly having trouble sleeping and suggested that instead of the clonodine patch that I try the pill form. He told me there really wasn't much of a difference between the patch and the pill (they are the same medication) and that the pill would actually probably help me more because it's effects would be stronger and if I took it at night before I went to bed it would make me tired which would help me sleep. So since he is the doctor and I trust him, I went with the Clonodine pill form. So now I am on Clonodine. Wow, I never thought I would ever say that.

I in fact just took my first pill! I am supposed to talk half of a pill for a week and then switch to taking the full pill. I take it 30 minutes before bed time so that it will make me tired and help me sleep but my neurologist says the sleepiness should ware off during the day time when I wake up.

I will continue to keep you guys updated on my medication situation. How many of you guys have been on Clonodine? Did it help with your tics? I know it is helping my cousin a lot!

Tuesday, November 19, 2013

My Neuro Appointment Tomorrow

Well tomorrow is my appointment with my neurologist. Ironically having had Tourette's since I was three years old and having been diagnosed for about 3 years now this will only be my second time seeing my neurologist. The first and only time I have seen him as a patient was when he diagnosed me about three years ago. Now I am looking into meds, specifically the clonodine patch that worked so well with so few side effects for my cousin. I'm nervous but also hopefully. What would it be like to lay down in bed to sleep and be still? I have never felt that feeling, and I there is a small part of me that holds the hope that I may soon feel that. Only a small part because I don't want to get my hopes up if it doesn't work out. I will update you guys soon on how my neuro appointment goes. At least my mom is being supportive about my decision to try medication.

On a side note my newest decision as of the moment is that I want to study to be a Pediatric Neuropsycologist who works in a hospital setting with children who have either epilepsy, traumatic brain injury, brain tumors, or neuropsycatric/ neurodevelopmental disorders.

Thursday, November 14, 2013


Meeting My First Person with TS Continued....

Well the girl I met on campus who also has TS didn't messae me back. I don't think she will which is a little disappointing just because it would have been really neat to get to know her better. She seems like a really neat person, but I just don't think she is interested in getting to know me better right now. Oh well. I have my camp family and my cousin and that's more than enough for me. I will see my camp friends very soon! In less than two months which is so exciting! To know that they are here for me is always the best :) and to know that I will have an amazing time at camp next year too with my cousin there as well is something I am really looking forward too! 

 Maybe sometime the girl I met on campus will talk more with me later or maybe we somehow will get to know each other better, maybe she just needs to think about it for a little while. I don't know what she's thinking or why she isn't wanting to be open/ why she doesn't want to respond to my message, but I am going to try to let it go, which is hard because of my OCD but I am really going to try to. I have people in my life who love and care about me, I have amazing friends who care about me too. I just have to think about them and things will be alright :) 

Wednesday, November 13, 2013

Meeting my First Person At my College who also has TS!

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus too. Her tics are more mild than mine, and she told me she doesn't really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state's TSA's. She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how i'm a counselor at camp twitch and shout hoping she would be interested, but she said that if she ever went to camp she would come home crazy. Which is true, I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level.

Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes. When I think about it those 5 minutes were enough. Enough to make me feel like I am not the only person at my college who has TS and has to deal with tics, enough to let me know I am not alone even though most of the time it feels like I am the only one. It was a nice 5 minutes, a nice conversation, and a nice connection. Even though it was only a 5 minute connection, it was a connection none the less. 

I told myself I wasn't going to message her on facebook afterwards though because I didn't want to ruin things. I didn't want to ruin those 5 minutes, and I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn't help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD...... anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person regardless of the fact that we both have TS, but I think its probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one on one even though we are both on the disability awareness committee and both have TS. I guess I feel this way because I have been feeling pretty low lately and don't want to get my hopes up. I miss my two best friends who of course go to different colleges than I do, I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college. I feel like a lot of my friendships here can be very surface level and like I can't talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness, and understanding, and the ease of making friends that I experienced at camp twitch and shout. It's just not that easy here at college. It's hard. 

Tuesday, November 12, 2013

Planning A TS awareness event on my university campus!

So excited to be planning at Tourette Syndrome awareness event on my campus for next semester with the disability awareness committee I am on at my University! We're going to be screening a brand new documentary about TS that is absolutely fantastic and we will have a speaker (who it will be is still to be determined)  and also a TS presence at the event. So excited to start preliminary planning and arranging with the committee! Maybe I will finally get to meet some other people who campus with TS through this event! This is helping calm down my nerves about my neurology appointment next Wednesday! :)

Neurology Appointment next Wednesday

I'm starting to get nervous about my neurology appointment that's next Wednesday. This will be only my second time seeing a neurologist for my Tourette's and will be my fist time pursuing tic medication. So of course my nervousness about it is making my tics worse! This is the same neurologist who diagnosed me, so I know he is very nice and is a great Neuro! But I am still nervous of course 

Tuesday, November 5, 2013

Camp Twitch and Shout Counselor Video

Was missing camp today, so I made this! Only 2 more months before the counselor reunion! I can't wait! I posted this on my own personal facebook page and one of my co-counselors who doesn't have Tourette's commented with "I miss my twitchy peeps!" Made me smile!!! Then I watched some of my videos I took at camp and that made me even happier! Now I'm ticcing a lot though. Oh well! The price we have to pay!

Monday, November 4, 2013

Tics and Anxiety Interfering with A Participation Assignment

Today in my poetry class it was my turn to lead class discussion. Everyone in my class had to lead discussion one day and then we would receive a grade for our discussion that we lead. I was already nervous about this because I had overheard two people in the class saying that the professor had given them really bad grades on this assignment. So today I went into the discussion feeling very nervous. I was extra nervous knowing I have already had some issues with this professor and my Tourette's/accommodations.

Participation in class is definitively a weak point for me because of my anxiety and tics. I am good at everything else, just not class discussion/participation. I tried my best to hide my anxiety, but my ability to lead the discussion was highly affected by my anxiety. The first half was already shaky seeing that my anxiety was so high, but then about half way through my body reacted to the anxiety with one of my least favorite tics. I've had this tic since I was in 6th grade and it cases all the muscles in my chest and throat and around my lungs to contract so forcefully that it makes it very difficult to breathe. So in the middle of when it was supposed to be my turn to lead discussion, my chest locked up and I ended up gasping for air and having to leave the classroom. The tic calmed down once I left the classroom and started walking around and letting myself relax, but by the time I could breathe normally again and came back to the classroom, class discussions time was over and we had moved on to the writing activity part of class.

After class I sent the professor an e-mail explaining why I had to leave class (even though I already have permission to leave class at any time) so that hopefully he will understand and not take points off for my grade.

I really hope he doesn't take points off from this grade because of my anxiety and tics and the fact I had to leave the classroom during my turn in leading discussion.....but I have to say if he does take off points or give me a really bad grade, I will be taking up this issue with disability services at my school who always supports me and backs me up with anything I need really. I don't want to have to make this into an ordeal though, but because the professor is just so young and new (this is his first semester teaching), I am not too hopeful that he will know what to do with the situation/ how to grade me fairly by not taking off points for something I can't control. So we'll see about this one. All I know for now is that he has not responded to my e-mail, which is not a great sign. We'll see though. Maybe he will respond to my e-mail tomorrow.

Sunday, November 3, 2013

Videos of My Childhood Tics

For those of you who haven't seen the videos I have of my tics as a child, I put them all together into one video. It helps me to see these videos. It helps me know that i'm not exaggerating, i'm not wrong, I do have Tourette's and have had it ever since I was a child, and I am not somehow making it up. I dealt with it when I was young, and have been dealing with it ever since I was about three, so I can handle it now. Growing up with Tourette's made me strong, and made me into the person I am today. That is what these videos help me to remember.

The first clip is a a video of quick eye blinking and facial tics. The second clip shows a lip pursing tic. The third clip shows echolalia/palalalia, a vocal tic in which I repeat my own words and the words of others. The fourth clip shows a complex tic which consists of brining my arms upward, widening and un-focusing my eyes, and tilting my head. And the fifth video is the long one which shows many of my tics during a dance class, some of which include licking my hands, small facial tics, ankle movements, hitting my tongue with the palm of my hands and with closed fists, falling on the ground (not sure if this was exactly a tic or what this is really), other tongue movements, and wiping my face with my hands and arms. Also in the end of the video you can hear my mom saying in the background "I can't wait till my husband see's this. At least finally he'll get the idea about what I mean when I say there's definitely something different about her." Every time I hear her say that line it really hits me. I have always been different, even when I didn't know it.

Preparing for Rush

Today was the first recruitment workshop for my sorority where we had to practice the actual things we will be doing during rush like singing, talking to many prospective new members (fake new members this time), etc. Just from the practice I am so overstimulated sensory wise! I have a giant head ache, my face hurts, and I have that familiar "zoned out" "brain fog" feeling. I will need a lot of Advil for actual recruitment which is in January. I'm really excited to bond with everyone, but also worried about the overestimation and of course tics too. Hopefully I will be on new medication by then though, so maybe that will help.