In need of knowledge

[Neophyte]

Hi. I was diagnosed with tourete syndrome about 10 years ago. I have three other siblings with it. I have a blinking tic, a vocal tic (grunting and clearing my thoat), a srugging and head tossing tic, and within the past year or two I started to bite my tongue and the inside of my mouth. Those tics are relativly easily repressed or concealed but I have resently developed a new tic that's very dificult to repress, let alown hide. See it has something to do with my breathing. It kind of falters. I don't realy know how to explain it... It's kind of like when you try to exhail when your cold..it just kind of comes out uneven like. It feels like when you've done alot of phisical exersion and are trying to catch your breath and someone starts talking to you, except that I'm not out of breath...Sorry if my decripion is bad. I realy just can't describe it... I guess the best way is to say that it feels as though my breathing is shivering... It's not that bad but is quite irksome and I'm afraid of loosing control (which rarly happens when people are around) over it. I was wondering if anyone here has heard of a tic like that. I sometimes wonder if it is a tic but I've had it for about 2-3 monthes now and I get the same feeling from it as I do from my other tics. I hope some one can help me. Thank you.

 

Neophyte[/b]

[Guest Guest_Lawsmith]

My son is 9 and was diagnosed with TS in May. His tics are all quite mild, but his most prominant tic is the irregular breathing tic. It is like he is gasping when he inhales and shivering when he exhales. He does this dozens of times a day. I was concerned at first that this would affect his intake of oxygen, but he is not winded when he does this, and he says it doesn't make him light headed or anything, so I don't worry. No one else seems to notice this tic at all. It doesn't bother him at all, and he has been doing it every day for months.

I hope this helps you not to be concerned.

 

lawsmith

[Neophyte]

Thanks alot. I had never heard of a tic like that before and I couldn't stop thinking about it which just made it worse. Thanks again I realy apreciate it a lot.

 

Neophyte

[Guest buddy]

Hi, this my first time on this web site. I have been reading all the notes for the last half hour and I can't believe that I am not the only one with these habits. I was going crazy thinking there was something wrong with me. I also have a similar breathing tic. I tend to hold my breath almost like in the pit of my stomach (if that makes sense)and then my body jerks when I exhale.When people catch me doing this they always ask if I am cold as I guess it looks like I am shivering. Sometimes it can make me feel dizzy and light headed but I keepdoing it. I also have blinking, sniffing and face jerking tics. I wish there was a cure. I read that Gaba was supposed to help but I haven't really noticed any change. I just wish I didn't have them. It gets me depressed especially if anyone says anything when they see me do it.

Does anyone have any ideas on what can help?

Thanks for listening....I have never discussed this with anyone before. It feels good to get it off my chest.

[Eric_LordTwitchAlot]

I have a simultaneous body pinning tic—that will twist me into an abstract and awkward posture--such as my head will contract until my ear hits my shoulder, then my arms and hands will assume the mummy position if you will…---then I will have a deep torso twist—then at the same parallel moment---I will have a hard vocal tic/yelling uteruses---that will force all my breath out----so—I’m locked in this ridiculously form—I can not breath, until the pinning tic is over—any where from—3seconds to an entire 2 minutes---I am left gasping—but—knowing full well---it will sooner release out of flight or fight syndrome basically---it is just really bothersome—I have blacked out before---I will begin to violently strike/punch hit my chest usually---or my head if I am ever so lucky---this encourages the pinning to release---a counter strike literally that is also a very very frequent tics that I do independently from the pinning bout-----this will happen at least 50 times a day(the tic not the blacking out)—beyond that my breathing is haltered by many of my tics---usually a lesser more internalized version of the tic pattern I just described---my breathing pattern and rate is very irregular---I will stop breathing in my sleep for 30 second to full minutes of time—I discovered this by freaking out a few girlfriends in the past-“LOLâ€â€”due to this grasping/pinning tic—anyway… this is a minor irritation to my more violent, explosive tics, and bouts of rage… but that’s another long story…

[Chemar]

Hi there everyone

 

I was offline after the passage of Hurricane Charley knocked out our power and so missed these posts.

 

Welcome to the newcomers

 

Breathing tics are fairly common.

 

 

buddy, GABA is a very good supplement for generalised anxiety, but it doesnt specifically help with tics

The supplement that has been found to be most beneficial for TS tics seems to be MAGNESIUM, especially in the form of magnesium taurate.

When one adds magnesium to the diet it is a good idea to also add calcium and zinc.

Usually it is recommended that adults(over 12) with TS take 1000mgcalcium:500mg magnesium and 50mg zinc.

 

Many people find that it is also good to add Omega fatty acids to their diet, as well as extra B vitamins.

 

here is a link to a thread I posted as to the treatments that we have used to help our son go from extrememly severe TS to very mild tics. He also had very debilitating obsessive compulsive disorder, along with anxiety and depression, and you will see that we also found supplements that helped that.

My thread is specifically designed for folks who have tics from Tourette Syndrome

 

http://www.latitudes.org/forums/index.php?...p?showtopic=687

 

 

also Claire has put together an informative thread on treatments that she and others have also found helpful for transient or generalised tics

http://www.latitudes.org/forums/index.php?...p?showtopic=689

 

please feel free to contact me for any further details

[Neophyte]

Wow Eric your tics seem horrible. Have you ever seen anyone for them, or taken any medications for it? What other tics do you get?

[Eric_LordTwitchAlot]

I failed to mention--

 

that during this pinning tics pattern--my eyes are pinned up and back into my head---while my eyelids sqeeze together as hard as they can---during the duration of the pin----so, during that time---I can not see or breath until it releases---after the release--I will usually have a rage bout after/during it to encourage release--like Im struggling against being drowned--very flight or fight response---for example--I performed this wonderful act at the dinner table--few weeks ago---when I came back from it--I had broken plate/glass shards stuck in my hands/palms/arms----all within a matter of 10 seconds---I have switched to plastic items---I am more than curious if anyone elses has similar bouts/Tics---

 

again--this is only a small and isolated pattern of tics--I have bothered explaining--I have many many other very severe/violent/self-injuriuos responces and modes of TS---If asked would be delighted to go into further.... (I have posted other threads in the past in regards to them)

 

If you saw me coming you would think I was on streetdrugs.... add severe ADHD for fuel--and severe ODC to add a bit more color to it all--plus the fact I punch my self all day in different degrees of impact--and yell/curse---and light increases/multipies everything to even more crazy levels---

 

anyway--of course my list goes on and on and on...... lol

[Guest buddy]

Hi Cheri, thankyou so much for replying to my message. I have learned so much in the last couple of days. Are having tics and TS the same thing? I had had only heard about TS involving things like swearing and yelling so I was surprised when I did a search on the internet for tics and TS came up. Do tics have to be more severe to have TS or are any tics generally connected to TS? I also read that it can be hereditry which made things fall into place. My Mom for as long as I can remember sniffed alot and scrunched her eyes, my eldest brother (44 yrs) makes grunting/clearing noises in his throat and my youngest brother (40 yrs) has had a stutter all of his life(it gets worse when he is nervous) I became aware of my habits after my Dad died 13 years ago.Maybe I always had them but weren't severe enough to really notice. Now they are at an extreme even from a year ago.(i am 34 by the way) i even find that when I am conscious of me doing them, I try to control them and they get worse. Sometimes my head feels like it is going to explode and my neck aches all the time, I think through tensing my body and holding my breath etc. I am a nervous person generally and find I cannot relax ....ever. Even watching tv I am nibbling on my nails or picking at my skin , as well as the usual face twitching or sniffing. It drives me crazy. my partner has been so good. She swears she doesn't see me do these things but I know she does.When I pestered her about it one day she finally said that she notices i blink alot more than other people but I know she is just being sweet about it. I know she sees the whole nine yards but loves me just the way I am. Although, I find myself not wanting to socialize with friends in case they mention my habits.Anyways, I have rambled on and on , and I feel like I have treated you like an agony aunt/ dear Abby.... just one more question though before I go. How do I know exactly which things to take?Is it just trial and error or should I try what your son is on?Thakyou so much again for listening to my woes....

[Chemar]

hi buddy

 

I dont mind being Aunty Agony

 

We went thru the most awful time when my son's tics started and so I know how much I would have loved to have found someone who could understand and offer me positive directions to follow.

All we got is "severe Tourette Syndrome/OCD.....no cure......have to go on meds"

 

but I know now that it was all for a purpose......my son has grown stronger and developed such a caring and matured outlook from the hard road he initially travelled, and we are now able to help others from our experience. It also helped my husband to realise that his "habits" and those of his dad were in fact also TS and OCD.

 

 

from everything you have posted, it certainly seems that your family has a TS gene circulating.

 

Yelling and cursing are actually the least common tics for TS but, I guess because they are so....err.....noticeable that is what most people know about it!

 

I am going to come back and post more tomorrow as my family are waiting for me to join them for something, but just wanted to encourage you that there is enormous hope for improvement.....even with full blown TS.

I would urge you to start reading around this forum and also in the TS section of the website for the informative articles etc.

Especially look at the posts here on the various tests and treatments that many have found helpful, and you will see a unifying theme.

 

Most important is to try to have a healthy diet and start supplementing, with at least a good pure (no color or flavor) multivitamin/mineral and the extra magnesium calcium and zinc and vit Bs(especially B6)

 

Feel free to contact me for more detailed specifics.

 

good night and see you all tomorrow

[Guest buddy]

Hi Cheri, thanks again for the encouraging message. I have been looking around the message boards and its amazing how many people suffer from this or have loved ones that do. I am going to order the vitamins etc tonight online. I really hope they make some improvement....

buddy.

[Chemar]

Hi Buddy

 

feel free to contact me if you need specifics

 

gotta run.....busy busy busy