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Update-moms? Any advice?

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Unread 02-08-2013, 10:13 AM   #1
jnt1989
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Hi everybody.
It's been a long time since I've been on here.
So, things have been going pretty good.
Lately my tics have really decided to show out, though. Not a problem. I've learned to deal with them, work around them, etc. Last night I got this major headache and then started ticcing on top of it...bad combination. I ended up in bed early. I just wanted to cry, but that would only make my head hurt worse, and I figured that would probably make my tics worse.

I said my first full phrase the other day too. It was a bit odd.

Now, I'm hoping some mothers can maybe give me some advice on dealing with my mother.
My mom thinks its up to her to try to fix everything I guess. When she realized how bad I was ticcing again, she started going on and on about what she thinks the problem is. She thinks its green tea making it worse lately. I explained to her that I drink just as much green tea as ever. I even quit drinking it for a while just to prove that it's not the problem. I haven't been sleeping well for a while, and she knows that I've always had a problem with my tics being worse if I don't get enough sleep. She just will not listen to me! And I finally had to tell her to just drop it a couple times. I even told her that all she was doing was aggravating me and that only makes it worse.
I'm trying not to be rude cuz I know she's just trying to help, but shes driving me nuts! She doesn't understand that I'm fine! Nothing terrible is going to happen because I'm ticcing so bad. I would rather her just ignore it and pretend that it's not there and act normal like everyone else does! I need her to understand that I am an adult and she doesn't need to baby me. I mean, sure there are times when I need my mom and need her help, but I will ask for it when I need it.
The way she acts is like she doesn't like that I'm ticcing and she just wants me to stop so she doesn't have to deal with it. Maybe she really is just trying to help, but it's getting annoying!
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Lara (02-09-2013)
Unread 02-08-2013, 05:53 PM   #2
Lara
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Hi again Jasmine,
It's really good to see your post and read your update. You were having extremely difficult eye tics a while ago and then your eye tics settled and you were getting contacts. How'd that go? Were you able to keep wearing them? I often wondered about you around that time and if they were fine or if they exacerbated your eye tics again.

Parents. Well............

The weird thing about mothers (and fathers and carers and siblings and friends even) is that they're mothers!

The other weird thing is that despite all the information and knowledge they may have gained over the years about something, when that something is happening to their babies/children/teens/adult children, the old mother bear instinct takes over and despite everything, all that info and learning can just go zoom out the window.

That said, some people seem to equate tics with illness. As you know, tics wax and wane and the cycle is different from person to person etc.. She's seeing an exacerbation of your tics and by the sound of it she's gone into mother bear mode and wants to find "a reason", "a cause". People do it all the time. It's the way most humans get through life.

So maybe she's only doing this lately because she's equating your waxing cycle as if you have something wrong with you. As you said about the green tea. I mean, for some people it is possible that too much caffeine in some types of green tea could possibly get them a bit ticcy. You are the only one who would know and you did a trial by going off it and seeing if it made any difference. It didn't. That being said, there are of course situations where exacerbations of tics can be caused by environmental issues, e.g. GABHS/Strep, medications, illness of various types etc.. You'd know all that.

So... something I learned a very, very long time ago. Some people actually tic more when they're relaxed. People get shocked when they read that sometimes, but it's true.

It's not always about a trigger or a negative reaction. Lots of people tic way more when they are in a comfortable situation. Usually that's at home, but if for some reason they're not able to "let out" their tics, then they will most probably end up doing it in the privacy of their bedroom or somewhere on their own without the scrutiny of other people.

That's part of the reason why people have been advocating education about TS so much especially in the past 15 years. It's been totally misunderstood for so long. It's not always necessary to find a reason, to find a trigger, or to fix tics. You are a young adult now and you know your own body and its reactions better than anyone.

If my child was sad, or anxious or depressed or angry, then I'd be vigilent. Tics... well at your age, you're able to speak out and say "Mum, I'm OK". Maybe tell your Mum what you said in those two lines about how you are OK.

I don't remember if you've said here how she's reacted in the past to any waxing periods.




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Originally Posted by jnt1989 View Post
She doesn't understand that I'm fine! Nothing terrible is going to happen because I'm ticcing so bad. I would rather her just ignore it and pretend that it's not there and act normal like everyone else does!
Quote:
The way she acts is like she doesn't like that I'm ticcing and she just wants me to stop so she doesn't have to deal with it. Maybe she really is just trying to help, but it's getting annoying!
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Unread 02-08-2013, 10:51 PM   #3
jnt1989
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Hi Lara!
Thanks... That makes sense and kind of helps.
My contacts have worked out great!

When my tics were bad before, it was extremely bad. I couldn't drive, couldn't work. I dropped out of school partially because of it because I couldn't drive and could not handle how impaired I was. I have learned to work around my tics since then. It was understandable that she would act that way when I was still learning about tics and discovering how my tics worked. Back then, I was helpless. I was dependent upon my parents for a while. There were days when all I could do was sit in the recliner because of t. So yes, I understand why she had to take charge then. Now is a different story.
When I drive, my tics become very vocal if they are very bad. And when I'm in a setting where I feel the need to be quiet, the motor tics are more prominent. I've learned how to manage things. I've learned that I can live my life as I would without, even though I'm living with.
I just need her to realize that she isn't living in this shell of constant movement and noisiness. So, she doesn't know how it really is. She doesn't know what's really happening.
I mean, there are times when she will comment that I seem to not really have had any tics for a while and I wonder where the heck she has been or who in the world she has been looking at! Lol!

Anyway... Ya...

More of an update, I told my doctor she was crazy. I don't know if you remember me saying she wanted me to get Botox for my eyes. I told her there was no way I would ever consider it. I'd rather live with the squenching. I actually stopped that not long afterwards, too.

I bought my own house. My sister and I are living together. It's a lot of fun. A whole new experience, that's for sure. It feels good to move forward and Teton with a normal life and feel independent again.
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Unread 02-09-2013, 06:16 AM   #4
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You have a great attitude, Jasmine.
Congrats on your new house. Well done. It's wonderful to hear how well everything is going in your life these days. It's about time too!
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Unread 02-09-2013, 09:07 AM   #5
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Hi Jasmine
the best advice I ever got as a mom when my son was newly diagnosed was from Lara
I was fretting so and driving myself and my son batty with trying to "fix" things, and then saw a post by Lara on another forum in a galaxy far far away

She has it repeated here and I still pass it on to other moms, so maybe you could suggest your mom read it too
here it is
It's OK To Tic
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Unread 02-09-2013, 08:51 PM   #6
jnt1989
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Thanks guys!
I have read that one before and I absolutely love it!
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Unread 02-17-2013, 09:47 PM   #7
simpleonline1234
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Hey jnt989,

I'm a 37 year male and I've been dealing with tics since I was 13 or 14 years old. My tics have moved ALL over the place during my life span. At first I developed head jerks and then my tics transitioned over to vocal tics.

The doc's put me on all sorts of medicine to try to control the tics but in the 1980's is was pretty much the old school medicine like Haldol, etc.

That was like getting hit with a horse tranq and having my mom wish me well at school. It was a bad scene all the way around. I was so tired that I slept through most of my classes.

Through the years my tics have come and gone and even came out in spells with relentless force that lasted for months.

It's interesting that I am just reading this forum because my tics that have been manageable for the past 6 years have recently struck back with force and turned into what looks like a spell that's been full speed ahead for the past year now and counting.

I can control them to a certain extend by using therapy I received that taught me to know when I am ticing and to focus on not moving that part.

I've always felt that I was a little ADD/ADHD because of the way that I get overwhelmed so easy working on easy projects. When I came back to finish the project I would just start over. That may even be a touch of OCD.

With my tics going crazy, and me not getting anything done me bosses have been on me for results so I said enough is enouh I went to the psyc doctor to see if I really am ADD/ADHD or OCD.

The psyc is going to get me a neuro work up test done to see what's going on as far as the ADD & maybe OCD goes but I will keep you posted on the outcome of all that. He told me that most likley he is going to just up my dose of Effexor to 225mg a day and then put me on Strattara for the ADD since it's a non stimulant.

But enough about me. I went through the mom thing too. At first they thought that I was making it up. Tics were not as easy to discover back then. I think for me though certain triggers make mine work.

I drink green tea everyday and it doesn't effect my tics...actually I'm drinking green tea right now.

She would actually make it worst when she brought it up / to my attention. I always told her that it was stress and no worries.

Over time she began used to it and it is just part of my life.

The psyc doctor told me that the best way to identify your triggers is to do them yourself.

Certain things set some peoples tic off and other things don't. For me stress is the #1 trigger for me.

Now whenever I feel a tic frenzy coming on I lap in some claiming ambient music and practice deep breathing. You'd been surprised how much 6 deep inhaled/exhaled breathes can relax your body.

For me though I am going to revisit my food intake, type, and things that I am exposed to then write them don't each day when I start having tic issues. If eating a certain food set my tics off then I won't eat that food anymore.

Another tip to keep in mine is that your body changes and things that didn't bother your system before can change on a dime.

Best of luck
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Unread 02-18-2013, 05:53 PM   #8
jnt1989
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Yeah, my friend and I were joking about the mom thin today. I haven't drank green tea in a few weeks just to make a point! And I been ticcing pretty badly for a couple of days, so we were laughing saying that its a lack of the stuff!

I started a new vocal tic. I say 'what' twice and then half yell 'what ya doin?'
The whole 30 min drive to church last night I was doin it because my vocal tics really come out when I'm driving during a rough spell.

I also started punching the palm of my hand over and over again. Actually, its 15 times to be exact. The same friend noticed I was doing it the same number of times every time I did it. She said "I don't know what you're doing, but are you doin it the exact same number of times every time you do it?" I immediately replied, "I didn't realize it, but ya, it's 8 and 7." So apparently I was counting without realizing. I don't know if that's maybe an OCD thing or what. My doctor did say that I have some OCD tendencies.
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