View Full Version : Is there anyone out there with Tourettes?


Energizer_Bunny
03-14-04, 09:48 PM
Am I the only person on the forum that actually as Tourettes?

lilthingsADDup
03-18-04, 01:07 PM
I don't have tourette's, but I have eye-blinking tics sometimes.

Energizer_Bunny
03-19-04, 11:57 PM
Are you on adhd stimulants? The stimulants can cause tics.

I started blinking when I was little...just constant blinks, I remember my parents saying, well,we will just ignore her then she will quit. She is just doing it for attention. Well, yes it went away...........but in Jr High, another tic started. And I was 36 when I was diagnosed.

neuroangel
03-20-04, 12:41 AM
You know the pressure that builds up in your knuckles, that make you absolutely have to crack them, no matter what?

Well, I get that build up either in or behind my eyes, so I roll them. Rolling my eyes has been an automatic thing for me since I was about 8 yrs old. I can make myself stop rolling them for about two or three hours, but it's a strain on my eyes and then they roll constantly for the rest of the day.

I used to get in trouble back at grade school for it.

A newer tic I have is scrunching my face, and my right hand tightens and releases...

I never told a professional about it, but I am going to very soon. I'm seeing my neurologist in April, so I'll ask him when I ask about adderal. The only thing I was ever tried on was strattera -- didn't work for me.

Cyndi (neuroangel)

Energizer_Bunny
03-20-04, 01:07 AM
Cyndi,

It sounds like you need to talk to your neurologists for sure on this. There are tic disorders, then there is tourettes. However, the stimulants can cause a person to have tics. But since this has been going on since you were 8 years old, you need to follow through on it for sure.

Please let me know how the neuro visit goes.

Piupau
03-24-04, 12:41 AM
My first post :) I have tourettes and adhd. I got my dx in october 2003. I thought I wouldn't get any ts-dx because I didn't tic (I THOUGHT!) but my doc said "You HAVE tics. You have tourettes if you can name at least two different tics (vocal and physical) you've had as a child." ;) He got a lot more that 2! *g* :D

Energizer_Bunny
03-25-04, 10:14 PM
Welcome to the forums.

It is amazing though that I ended up finding tics that I realize were not there. And one of the strange things about tourettes is that a tic can eventually go away and be replaced by another tic.

Piupau
03-26-04, 12:26 AM
Yes... and the tic that disappeared can come back again! I realized soemthing was really wrong when I started to spit in my car at work! I thought I had a brain tumour! Making piruettes and hopping without acutally wanting to do it. My body just did.

Small tics, like in my arm or my head/face are "normal", but spitting!!!???!!

Energizer_Bunny
03-26-04, 03:55 AM
Oh wow piupau, I know that is a hard one to have to deal with.

I had a tic that would come across in the car with me as well and when it first happened I was afraid of driving because my head would go down and I would have to squeeze my eyes shut and flinch my face up. Kinda hard to drive with your eyes closed. But I managed to get through it with one eye open. The tic still happens but not to the degree that it use to.

Are you on medications for your tics?

Piupau
03-26-04, 05:50 PM
No, no meds except nicotine. Selfmedicated. Started to smoke at 8 yo. Stopped at 14 and started to use snuff 6 years later. No smoke, won't damage your lungs ;) But I believe nicotine keeps my tics smaller, maybe it's imaginary maybe not. But there must have been something with it. When I stopped smoking I got depressed and totally nuts. Tried suicide a couple of times and "found myself" again when I got back on nicotine.

I have head-tics too, I jerk my head to the side. I was chatting with a friend having my webcam on. She thought I didn't like our conversation and was bored. She thought I looked at my watch all the time! *rofl* I didn't know what watch she was talking about, I don't have one. Then I figured, she's seen my tics! :p

Webcam is scary, I forget it's on and then I let it all come as it is! :D

Energizer_Bunny
03-26-04, 09:36 PM
Here is some information for you Piupau on Tourettes and Nicotine. I am not sure if you are aware of it or not.



Nicotine patches may help patients with Tourette's sydrome control some of the involuntary movements that plague patients.

http://news.bbc.co.uk/1/hi/health/1549392.stm


I have also gotten on web cam and ticked. The reason I did it is because I wanted people to see what a Tourettes person could actually be like.

I am sorry to hear about your past history. I know having Tourettes is tough and many do not understand, but I am with you.

bigbowlindude
06-25-04, 06:36 AM
I just want to say hi too. I am fairly new to the boards. I have tourrettes also. I figured it out after my mom was watching talk shows with the people who have TS, then I looked it up and here I am. I saw a neuro, but he was no help really he rushed me out. I wanted to ask, I saw you had said the meds for add makes your tics worse, do you take meds for ts also?

zakool21
07-27-04, 11:06 PM
I was diagnosed with Tourette's Syndrome when I was around 9 years old. Elementary school plagued me because I tic'ed like nobody else, and had trouble with constant fidgeting. My 4th grade teacher recognized my problem because she herself had ADD. I went to a psychiatrist/specialist who diagnosed me and put me on Tenex. I'm 17 (soon to be 18) and still take Tenex, currently at 6mg total per day.

My case is rather minor (to say the least) and have never had any problems with tics in school since about the 6th grade. It seems to be improving, hopefully to the point where I don't need to take the meds anymore.

My dad has OCD (which would explain the genetic part of the disorder), and I would probably call myself the slightest bit compulsive about certain things. The Tenex helps substantially, but I have found that it slows me down a little bit. I take 2mg in the morning and 4mg at night. If I do not take my evening dose (6PM or dinner time, whichever comes first), I notice it by the time I am ready to go to bed - I have a hard time settling down and going to sleep if I don't take it.

Also, take weekends for example. I sometimes do not take the Tenex until noon or so. I seem to have a lot more energy and ambition, but I start to wear myself out quickly.

One tic that I could faithfully call a tic at this point is eye blinking. I have always blinked a lot. I *do* have dry eyes, but even with eyedrops, I still blink a lot!

I do have a strange tic that comes and goes depending on my stress level. It's kind of like a shriek, but done by inhaling rather than exhaling. That one is usually reserved for close friends and family only, and can be suppressed when needed.

Another very common one for me is knuckle cracking. I do it all the time. Toes (when shoes are off), but mostly fingers.

I have some other vocal ones, but again, they are mostly reserved for friends and family.

I was amazed to find a board like this. I was just searching for people who use Tenex (the seemingly few that use it for Tourettes), and came across this particular board.

I don't know whether it's just my personality style or a characteristic of my tourettes, but I have trouble studying or reading anything that is not of interest for me. Assigned reading has been trouble for me, as has testing in general. It's just sitting down and absorbing the information that I have trouble with. I'll really meet my match this fall, as I start at UC Davis as a freshman. However, I have been able to choose classes that are of more interest to me (sociology, french, writing), so maybe I'll be more able to study. Who knows....

Now I realize that I've basically poured my guts into this post, but this seems like a good place to do it. I'll be back often!


~Andrew

Energizer_Bunny
08-02-04, 02:40 PM
Hi Andrew and welcome to forums.

As you get older, it is said that tics do reside some. I was placed on Tenex as well prior to going to a neurologist for what I felt was a definite diagnosis of having TS. My psychiatrist had diagnosed me with TS, but for some reason, I did not want to believe the man.

The Tenex was very hard on me. I live in Houston and work downtown. In downtown Houston there is a tunnel system. Once I got off the bus and started walking through the tunnels to work, I had actually started getting to a point where I could not make it and had to call a co-worker to come and get me. I immediately got off of that medication. It is my understanding that the medication is used to treat children with ADHD and to help with the hyperactivity. The dosage that I was on, is much lower than your dosage.

If you are having problems reading and staying focused on reading, you may want to see if you have AD/HD. However, if you are having tics while trying to study or read, that in my opinion could distract you and keep you from maintaining focus while reading.

I am not sure because I am not a doctor, I was just throwing some things out there for you.

I went to a TS seminar, January a year ago.....one thing that I really got out of the seminar is that with TS, you need to treat what is worse first. A lot of times, the TS is not as severe as the OCD or the ADHD. In my case I first had to treat the ADHD, because I was not productive in my boring repetitive job, then I had to treat the TS. I do have OCD problems, especially with intrustive thoughts and things have to be even. However, I can't be treated for the OCD because I do not do well on SSRI drugs. So, I deal with it.

There are other medications that may not wear you out as much as the Tenex does. My doctor found out that when I get anxious I tic more. So what we decided to try was to stop the anxiety, which in turn helps to slow down the tics. So for that I take Klonipin. He as also started me on a muscle relaxer and one of the reasons for this is because my tics are dystonic. I tic and hold it and just squeeze the heck out of my muscles until I get that just right feeling. I also do botox treatments in my face, neck and shoulders.

My point is that there are other options out there for you and you may want to talk to your doctor or even see a neurologist who specializes in movement disorders.

And again, I welcome you to the forums and I am glad that you found a place where you feel safe and can express your problems and feelings.

Sherry

zakool21
08-02-04, 04:44 PM
Sherry - what kind of side effects were you getting from it?

I know that everyone reacts differently to different medications, but were you getting confused, dazed, or dizzy?

I do find myself the slightest bit inarticulate at times, but usually it's just the opposite.

I have not been in to see my psychaitrist in a while, but I think it's time to schedule an appointment.

Energizer_Bunny
08-04-04, 12:51 AM
Hi Andrew,

Please clarify for me....what type of side effects am I getting from what med?

One thing we must remember is that everyone reacts differently to these medications. One person may do great on one med where as another person may not do so well.

Sherry

zakool21
08-04-04, 08:08 PM
The tenex... You mentioned it was hard on you.

Energizer_Bunny
08-04-04, 09:06 PM
I was basically exhausted and had no energy at all. Tenex is commonly used to treat high blood pressure. But can also be used to treat other conditions as determined by your doctor.

Possible side effects that may occur while using this medicine include dizziness, drowsiness, headache, constipation, gas pains, diarrhea, loss of appetite, fatigue, and nasal congestion

Piupau
08-05-04, 12:09 AM
I've also got some meds for high blood pressure, but it was for migranes. I also lost all energy in my body and when I did it was like "system shut down". I just quit doing whatever I was doing and fell to the floor. Just like I had an on/off switch. I hated it and stopped when I realized it was the meds doing that. But on the other hand... when I was "off" I didn't tic ;) *g* Don't know your name for that med but it contains something called "Metoprolol".

Energizer_Bunny
08-05-04, 05:49 PM
The brand name for that is called Lopressor; Toprol XL

Metoprolol is used to treat high blood pressure. It also is used to prevent angina (chest pain) and heart attacks. It works by relaxing your blood vessels so your heart doesn't have to pump as hard.

Common side effects include

dizziness or lightheadedness
excessive tiredness
upset stomach
vomiting
diarrhea
constipation
rash
cold hands and feet
If you experience any of the following symptoms, call your doctor immediately:


difficulty breathing
sore throat and fever
unusual bleeding
swelling of the feet or hands
unusual weight gain
chest pain
slow, irregular heartbeat
Symptoms of overdose may include:


dizziness
fainting
difficulty breathing or swallowing
swelling of the hands, feet, ankles, or lower legs

Little_Rivkah
03-26-05, 02:05 AM
Am I the only person on the forum that actually as Tourettes? You aren't the only one. :) I was diagnosed with Tourettes when I was about 9 or 10. I am currently 23. Stumbled across these boards today looking for chemical links in the brain to Tourettes.

I've also been diagnosed with ADD. Both cases were mild but persistent enough in childhood for my parents to send me to a psychologist in order to seek answers. However, most of my symptoms for both disorders have either receded with age or I've found alternative ways of dealing with them (such as "moving" a tic to another body part . . . such as tapping my foot . . . and focus-based meditation. I've never tried drug therapy.)

Nice to meet ya'll! This is the first time I've ever spoken to other people with Tourettes!

Indiki
12-20-05, 02:19 PM
Am I the only person on the forum that actually as Tourettes?
Nope.

I'm 38, TS/OCD. Diagnosed in 1983 at age 16.

My youngest son is 9, TS/Asperger's. Diagnosed with Autism at age 5-6, Tourette's at 7-8.

You are not alone.

brianb

Valhallabound
12-20-05, 02:52 PM
You are not alone! I have tourettes which has since "morphed" into OCD with age. The two are so inter-related it all makes sense to me now. I was diagnosed with ADD and tourettes when I was in gade school and had a heck of a time with vocal and facial tics. They subsided with age, I'm now 24, and OCD became a problem. However, interestingly enough along with a small dose of an SSRI, stimulants for the ADD actually help my OCD and any lingering tics, contrary to what most peope experience with tourettes and ADD meds - just how my strange 'ole brain works I suppose, hehe.

BTW, what triggers your tics most? Mine come to the surface when I'm tired and/or stressed... :cool:

Naomi2
02-03-06, 01:49 PM
Undiagnosed (seeking help slowly):

Chronic Motor Tic Disorder
(Obsessive Compulsive Behaviour)
Attention and Organisation problems

jaz-z0r
02-07-06, 02:06 PM
Hey guys. I have been looking for any type of forum or support group that deals with Tourettes Syndrome. This is one of the bigger disorders I have and I would like to be able to talk with others that actually know what I am going through. Let me tell you a bit about myself : I turn 21 in March, I was diagnosed with Juvenile diabetes at age 5, Tourettes at age 13- which now we see that I had it way before,Obsessive Compolsive Disorder,Bi-Polar disorder & a low thyroid. I am on medication for all of these disorders, and some seem to help, while others don't. I was taking 4 Orap 2mg pills for a long time now. They seemed to help the Tourettes just a bit. In 9th grade I started getting these horrible panic attacks and almost came close to killing myself. Anyways, about 4 weeks ago I stopped taking the Orap because after talking to many doctors we suspected that the Orap was making my brain chemicals different in the section that causes obsessive and paraniod thoughts. So, for 4 months, I havent had ONE panic attack ! It's been great not having to deal with that anymore, but now my Tourettes is full blown because I stopped taking the medication. I can't leave the house to goto the grocery store, hang out with my friends or anything that I use to do because my vocal and motor tics are horrible. I have been avoiding the phone like the plague. I screech at the top of my lungs, blurt out obsenities all the time,twitch my eye and many of other things. Thank you for reading all my babble. I'd really apreciate it if someone with Tourettes would respond so I can have a better sense of feeling and dealing with this disorder.

AlyzI
05-22-06, 08:18 PM
Me me me.
Hi Energizer_Bunny- I just wanted to tell you that my tics were brought out by medication for ADHD. I always had blinking tics on and off and ocd. I was on ritalin, concerta ...currently the adhd is too much so im on focalin which makes me tic but if i can concentrate thats that. I think im going to try and find coping mechanism for adhd on the forums somewhere. So I can get off. Are you still taking medication for adhd? Or do you have any good coping techs that have helped you without medication? :eyebrow:Interested.
~Aly