First night of meds for RLS, Melatonin and Iron

My first night of Melatonin went well!! I fell right asleep with no tics interfering with sleep and only a few RLS movements. I don't know if this was because the Melatonin or if I am still simply more tired than usual and less stressed than usual because of summer, but we will see. Hopefully that night of amazing sleep is just a small sample of what's to come! Gosh my life would be so much easier if every night was like last night! Fingers crossed! 

Also I took my first dose of Iron for my RLS this morning! Hoping that works too! 

Restless Leg Syndrome And Tourette's

Tonight will be my first night taking Melatonin and tomorrow I will take my first dose of Iron. Both are to help with my restless leg syndrome which is yet another co-occouring condition that comes along with Tourette's. Both my brother and I have restless leg. He was diagnosed half a year ago and I was diagnosed about two weeks ago. Restless leg is nothing compared to my OCD, anxiety, panic attacks, or sensory issues, but it has been starting to interfere with my sleep. Less sleep means more tics the next day, so hopefully this new medicine regiment will help with my sleep and indirectly improve my level of ticcing during the day! Wish me luck 

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.

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....

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 :)

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!

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 

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.

Setting Up an Appointment with my Neurologist for the Colondine Patch (check!)

Well it's official now. I set up an appointment with my Neurologist to get information about/try out the Clonodine Patch as medication for my tics. I'm nervous but a small part of me is excited too. I am starting to like the idea of a decrease in my tics more and more. I think at first I was just nervous about the change. Now that i've had a little time to mentally adjust to the idea, I feel better about taking this step. My appointment is November 20th at 3:00, less than a month away. Wish me luck!

Called My Neurologist

Well I did it. I called my neurologist this morning to set up an appointment to get information about the Clonodine patch that helped my cousin become tic free. My neurologist technically is a pediatric neuro, but the scheduling person is going to e-mail him to see if he will see me even though I am 19. The movement disorders clinic will call me back after they find out if my old neuro will see me. 

I never thought I would be seriously inquiring into medication. I am certainly surprising myself. We'll see where this goes from here. I think I am getting more used to the idea of medication and also more used to the idea of my tics getting better. 

Clonodine Patch?

So long story short, my cousin and I have been connecting a lot through text. I am so glad we have a better connection now. She makes me feel so understood, which is something I rarely get from family. She understands me on a level like no other, like the people at camp. 

The only thing is that she's been on this thing called a Clonodine patch for a year and says she is 100% tic free. I think this is fantastic for her and I am so happy she doesn't have to deal with tics anymore. It's just I guess selfishly it makes me feel more alone. I shouldn't feel this way because regardless of if she has tics or not right now she still has Tourette's none the less like me. I have a bit of a decision to make though now. Our cases are so similar and our genetics are so similar that the clonodine patch could help me a lot too. I can't beleive i'm saying this, but i'm more afraid it will make me 100% tic free than I am afraid of any possible side effects. I've had tics for so long now and my tics are a part of me. I am afraid of not having my tics. Sure I would love to not have to supress in public or to not have that feeling that I need to tic during a movie or in a big class with lots of people in it and have to supress it. But what about when i'm with my friends? what about that feeling of love and acceptace I get from when i'm ticcing like crazy and my friends treat it as if it it 100% normal? What about that feeling of love and acceptance I feel at camp? Would I still have that feeling there without my tics? Would I still feel like I belong there? What about how my tics make me feel special and unique? Would I still feel special and unique without my tics? I don't know.

Gosh there are so many emotions wrapped up in this. But I feel like I don't have a choice, the possible benefits to my health and well being that this patch might create outweigh my feelings of what I would miss about being a ticcer.

I can't know 100% that the patch would get rid of my tics, it's only an assumption based on what it did for my cousin. But it's running me though a lot of different emotions right now. I think most of all I am afraid of change like always. I never have liked change, and this would be a major change.