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52 Weeks of TS: Week 5

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first four weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Anxiety is an evil beast living inside me, taking up residence and using my body like an apartment building. It’s living in apartment 3-B, right next to OCD and ADD. I never said that they could move in, in fact they never even signed a lease. Sometimes I wish I could evict them, but if they never moved in what would you be reading right now.

Every Sunday I reflect on my past week, and every Sunday I’m amazed at all the activities and experiences that have occurred. This week has been quite an interesting one to say the least. Monday I had my physical for my life insurance policy. Now this was not a normal physical where you go to the doctor’s office, the doctor actually came to my house. At first I thought, wow, this is convenient. OH NO! I did not take into consideration that he was going to be taking my blood and need a urine sample.

Oh yeah, I had to urinate in a cup in my bathroom and transfer it into two test tubes. I gave him the test tubes and watched him put the test tubes on my dining room table. He then proceeded to take my blood. Yep, I sat at my dining room table as this stranger took my bodily fluids. I sat there and just stared at these vials of blood and urine on my dining room table. I just silently screamed in terror and disgust. I spent the rest of the day cleaning my table, and bathroom. (Excuse me while I go antibacterial my hands).

That night, was not the best night’s sleep. I don’t normally tic when I’m asleep, but there have been occasions when I tic in a dream and actually tic in reality and wake myself up. I did this that night, and despite the fact that I had just went to sleep two hours prior, I couldn’t get back to sleep.

My OCD just started going in over drive. My brain went into full gear, and it didn’t help that my husband was snoring next to me. It’s been thirteen years with my husband, and his nightly snoring. I’ve pushed him, rolled him over and took his pillows away, but he still does it. I’ve considered earplugs, but then my OCD goes on a tangent.

What happens if I have the earplugs in and there’s an emergency in the building like a fire? I won’t be able to hear them pounding on the door, and my husband sleeps through everything. So in other words, earplugs equal death. My tics start about fifteen minutes after I wake up, so after about a half hour sitting in bed, my brain is racing, husband snoring, and tics a ticcing, I got up and went to the living room to watch the brilliant TV programming that is on at two in the morning.

On an exciting note, I have made an appointment with a TS specialist at Columbia University.

I’m very excited about this, I haven’t been to a doctor for my TS in almost 20 years. With the void of insurance, it was difficult to afford a doctor, and I just got used to my TS. Now that I have insurance I figured it’s time to take advantage of it. Plus the fact that the past year or two, my tics, OCD and anxiety have gotten much worse.

My anxiety has kept me from doing many things and being part of social activities. My tics have become more noticeable, and I’ve developed new ones. As for my OCD, I kind of like it (my house is spotless). I think one of my main reasons for seeking the intelligence of a specialist is because of my last visit to my general practitioner.

After a discussion of my ADD, and ADHD, he prescribed me Adderall. I did one of my neck/shoulder tics, he looked at me and asked me “What was that?” I looked at him and said it was one of my tics, and asked him how much he actually knew about TS. He could not give me and educated answer.

This concerns me, especially for the fact he is prescribing me medication for the symptoms. I later heard from a friend that a person with TS should not be taking Adderall. As I said this was just an uneducated friend, so I’d just like to talk to a specialist about what meds I should be taking.

In spite of all of my tics, I’ve never really injured myself as a cause of them. However, this week I did pull something in my chest. It’s not a horrible pain, but every time I do a certain tic, I am reminded of it. When I was younger about once a month my neck tic would, I guess pinch a nerve or something and cause a gut wrenching pain that shot up into my brain and would paralyze my right side.

This has not happened in a very long time. Even though it would only last a few seconds, those were the scariest few seconds in my life. This happened a lot while driving. My anxiety level shoots through the roof while driving, which then triggered my tics. This is the main reason I try not to drive anymore, I don’t feel as if I”m a very safe driver with my head flinging around rather than watching the road.

It’s a great thing to live in NYC and have such a great public transportation system. I guess I’d much rather deal with the Petri dish of disease on wheels then being behind the wheel and have the chance of killing someone. Like the earplugs, me driving equals death.

There are many studies out there, about what can help our tics, but nothing proven to work. There are different types of diet, or dietary supplements, yoga, acupuncture, massage therapy and more.

As a person with TS, I plan to try some of these different paths to see what helps me. I hope that what helps me can help everyone, and I’m so excited to have all of you join me on this journey. The earliest appointment I could get with the TS specialist is a few months away, so stay tuned.

Until next week, “I’ll tic to you later.”

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  1. Just recently took my son to Columbia University for his tics. We were told to treat the anxiety and that would help control my sons tics. I really did not feel that I received any information from the “specialist ” that I haven’t heard before. Although a brilliant resume, very nice person, I do not think the doctor took my sons tic issue seriously. The doctor sees really extreme cases of neurological problems. So when my son walked in appearing on this particular day to be the ” what people perceive as normal” boy, I don’t think she saw how the tics can strongly effect his life. We will continue seeking a doctor that has more experience with tics to help him.
    I hope your visit is more productive.

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