10 Common Tourette’s Questions & Answers, Part 10

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 10th and final in a series of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to all of the other parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8
Part 9

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Are There Ways to Lessen Tics?

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Should I have a child?

Hello. First time on this site. How is everybody? I hope we can create a better environment for Tourette Syndrome patients so they have a better life.

I have an issue that I could use some help with: My nephew has Tourette, and I wanted to know the ideas on how much is the chance my child would have this syndrome?

Any help or insight you could provide would be much appreciated. Thank you!

10 Common Tourette’s Questions & Answers, Part 9

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 9th of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to the first 8 parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Can People with Tourettes have More than One Disorder?

Along with my Tourettes, I have OCD tendencies and generalized anxiety. Sometimes, it’s hard to tell where one disorder stops and the next one starts because they share so many symptoms. Tourettes is often comorbid with other disorders. That means that this disorder is often present with at least one other disorder, or parts of it at least. The Psychiatric Times article, “Tourette Syndrome,” reports that individuals with Tourettes often have ADHD or OCD. (And many people have parts of all of both!)

For more information, see: Comorbidity in Neurological Disorders

TourettesComorbidity

52 Weeks of TS: Week 16

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 15 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Here we go. I said last week that this week would be an interesting and special entry. I didn’t quit smoking once again, but I’m conquering some fears — or at least trying. I’m on a four-hour bus ride to Boston from New York for work. I have practically bathed in Purel and Lysol, and have taken extra Klonopin.

A gentleman sat down next to me and within about five minutes, I warned him I have TS, and besides the four-hour bus ride, he will also have to deal with my ticcing. He was actually very responsive and thanked me for my honesty. Suppression is usually our first agenda, but not today. I’m completely out of my comfort zone. There will be no suppression on this four-hour bus ride. I’m just pretty much praying he doesn’t start sneezing, or coughing.

I’ve done this ride dozens of time, but always in the comfort of my own car where I can tic with no problem. We’re ten minutes into the ride, and I have an overwhelming feeling to just burst out crying. We’re actually going to pass by my house in about 10 more minutes, and I’m trying to control the urge to just get off of the bus, get out, and go home, but I won’t. If I do that, I’m just giving in to my disability. I think I’m going to try to channel that super hero inside of me and make my way through this.

I’m trying to suppress my tics as much as I can, I mean I don’t want to punch the guy next to me. My neck shoulder and throat clearing are the ones I really can’t suppress, so those are the ones he has to deal with. In all honesty, I could of just triple dosed myself on Klonopin and passed out, but I think writing about my experience will be more interesting — especially for all of my readers.

Speaking of Klonopin, I guess the big question on hand is, three weeks of medication, but are they working? It’s still somewhat hard to say. This week has been so crazy with work I’m confused on what I’m actually felling. This week I have been doing a freelance job doing hair for a musical. Besides being a very stressful situation, I’m also just overly exhausted.

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Topamax TS medication wasn’t for me

So for the first time in more than 15 years, I decided to try some medication for my Tourette Syndrome. I had heard about it, and so I decided to give it a try. It’s called Topamax, and fortunately I decided to keep a daily journal of all the positives, negatives and generally how I felt:

Day 1 – 50mg: Not much difference, slight relaxation in tics

Day 2 – 75mg: Body tics noticeably better, face tics same as always. Very tired, bad taste in my mouth, and my heals feel like they are falling asleep (pins & needles)

Day 3 – 100mg: Body tics much better, facial tics remain the same. I have to chew gum to counter act the nasty taste constantly in my mouth. Sometimes I find it hard to focus. I also find myself bored easily

Day 4 – 100mg: Same as yesterday. Foods taste weird. I no longer enjoy the sweet sweet taste of coke and red bull. Sometimes feel a bit jittery. Tiredness beginning to subside. Over all I do like the way I feel aka lack of tics.

Day 5 – 100mg: I constantly lose track of what I am doing. I constantly misspell things. My memory has gotten a lot worse. I hope these side effects even out. My mind no longer races with 50 thoughts at once

Day 6 – 100mg: I find that my OCD is no longer what it used to be as shaving my head and parking my car (perfectly) are both next to impossible

Day 7 – 100mg: A dull headache and frequent sick stomach plague me. Nothing overwhelming but defiantly noticeable. Occasional dizziness, possible depression? Not sure yet.

Day 8 – 100 mg: I sometimes find it hard to talk, and when I am done talking my mind feels “empty”. My whole body buzzes occasionally. My lips tingle. I am starting to miss what makes me “ME” Not sure if this all is worth it.

Day 9 – 100mg: Went to men’s breakfast at church, when it was over we went to go up to the upper building to watch a video but for some unexplained reason I ended up at my parents’ house 15 miles away.

DONE WITH TOPAMAX

Side note — Though I enjoy the feeling of being “normal,” I find it to be quite boring!

Tim Howard NJCTS Leadership Academy set for 2015!

Following a hugely successful pilot run from August 1-3, 2014, the Tim Howard NJCTS Leadership Academy is set to return in 2015! Taking place from August 6-9 at Rutgers University, this academy for teens with Tourette Syndrome focuses on the three main areas of biology, psychology and the social components of having a TS diagnosis.

Participants will learn about the brain mechanisms behind Tourette, the psychological disorders that present challenges and the social aspects of having a stigmatized condition- we put a big emphasis on resilience. To learn more, or to become involved in shaping the future for the 1 in 100 children with symptoms of TS, visit www.njcts.org or call 908-575-7350.

I could be ticked off, but I’m too excited!

kids start school

Greetings from Happily Ticked Off. Remember me? That once faithful blogger who helped you navigate through the highs and lows of tics? The person who gave you all sorts of encouragement when you felt worse than a nit in your kid’s hair after a session with the lice lady?

Side note: Do any of you non-L.A./New York readers have this service? A real, live nit-picker who will comb baby lice out of your kid’s hair one painstaking strand at a time? Yes, even with much of our world in dire poverty, I say without apologies that I blew $400 bucks a few years back to deal with what I can only refer to as the Lice Infestation of 2010. It’s chronicled in this article, “Of Lice and Men.”

SUMMER

Did you all have a good summer? I, personally, did not. Mine consisted of this:

  • Commute 1 1/2 hours each way for a writing gig that kept promising insurance but didn’t give it
  • Schedule kids for play dates and camp dates around my husband’s work schedule – that schedule being his very own IT company start up which, of course, does not pay insurance, but we have a dream, people! Dental, schemntal, insurance. Who needs teeth! I’ll start on my smoothie regime, lose weight, save money on the gym, and buy health insurance!
  • eBay on the side to make $29/month to put toward elusive insurance, only to inevitably spend it by the end of the month because I can’t take cooking, cleaning and kid wrangling ONE.MORE.SECOND. so I give my hard earned income to El Pollo Loco, Taco Bell or some other fast food joint that is not full of gluten but inevitably causes me to worry that I’m going to make my kids die an early death from their GMO-laden, toxic, hormone pumped chicken/cows, not to mention increase tics because, you know, I’m going to cure this whole syndrome with food alone.
  • Have a few people close to me be less close to me because I’ve been so busy working my patience resembles a burned out electrical chord on a dried out Christmas tree and, well, apparently I’m not as much fun to be around when I’m on four hours of sleep, six cups of coffee, and enough Oreo cookies to make Santa vomit.

After 8 weeks of this insanity routine, my kids started school.

Normally I cry.

This year, it was all I could do to numbly kiss them goodbye at the classroom door.

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10 Common Tourette’s Questions & Answers, Part 8

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 8th of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to the first 7 parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Do Tics Change or Stay the Same?

Tics wax and wane with time, wellness, stress, and whatever else the body decides to throw at the individual. (I’m personally sensitive to junk food.) Over the years, my tics have changed. Some of left and haven’t come back yet, while others come and go as they please. I develop new tics from time to time. (Sometimes, even on purpose!) While this can be frustrating because you never know what to expect, it can also be nice to know that when tics are bad, they’re probably not going to stay that way for too long.

For more information, see: Me and My Ever-Changing Tics

TourettesFactChangingTics

 

52 Weeks of TS: Week 15

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 14 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

So I guess this week is really like a results show. How was my week with my new medication regimen? Did my tics change with the void of smoking? Did my new work out schedule change anything with my tics and anxiety? These are all difficult questions to answer, especially after only one week. I’m sure with all the changes going on in my body it will take time to see any results, and I’m well aware of that.

I guess I can start by saying that as for the quitting smoking, I’m a failure. I did not quit. I will be 38 years old this year and I have been smoking for almost 20 years. About five years ago, I did quit cold turkey for three years. I can’t really say if I noticed any differences in the tics at that point, but I wasn’t really paying attention at that point.

When I quit five years ago, I read a book “The Easy Way to Quit Smoking” by Allen Carr. The book points out many facts of smoking, and is almost like a hypnotism book to make you stop smoking. You read the book, and by the time you finish the book, you don’t want to smoke again. For me, the book did what it said it would. I quit for three years.

As I said last week, there are many studies out there that says, nicotine helps reduce tics, but nothing is actually proven. This concept confuses me seeing that nicotine is a stimulant and studies say that stimulants actually trigger tics. Is there anything out there that will actually help us? I guess we all just have to try different things for ourselves, but I am going to make another attempt to quitting smoking this week.

Maybe next week I will actually have some more info for you. I have been smoking for so long, and honestly, I HATE it. It’s gross and expensive, so I hope to not let you down and actually defeat the nicotine addiction and say farewell to the evil beast.

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