Dealing with Tourette's

[kimmie]

Hi everyone,

 

I'm not sure if this is the right forum to turn to, but I desperately need help with my situation and will greatly appreciate advice anyone can give me.

 

One of my closest friends has Tourette's Syndrome. We have been friends for 9 years, and I never really noticed it because his tics were strictly simple motor ones that didn't happen very often. In fact he wasn't officially diagnosed with Tourette's until he was 20. It appears that his condition is getting worse with age. He is now 23. My friend and I started dating in October, and two weeks after this began, he developed a very vocal tic that has only gotten worse. It started off quiet and only occurred at random times, but now he makes this sound every few seconds. It's very loud and disruptive. He has never experienced a vocal tic this severe. I have noticed that the sound occurs very rapidly and more often when he is nervous or excited. I've also noticed that it occurs more frequently when we are alone or with my family. However, when we are with mutual friends, it is not as prominent; although it is still very noticable. I am wondering if he is anxious about dating me and being around my family and that is causing the increase in tics. I'm not sure if this is a factor, but my boyfriend is a smoker. He has tried to quit smoking since we started dating, and that too has made him very anxious.

 

I hate to say this, but his new tic, to put it bluntly, is driving me crazy. I understand that he cannot control it, but I don't know how to deal with this. Now we are having relationship issues because I find it incredibly difficult to be intimate with him when he is constantly making this sound. I am also relectunt to go to certain places, like movie theaters, with him because the sound is very disruptive. However, he does not care that his Tourette's effects other people. His response is that if "they don't like it, it's their problem." I also have a hard time dealing with this attitude.

 

My boyfriend has been on medication only once before a couple of years ago. I'm not sure of the dosage, but the medication was Haldol. He hated the way it made him feel, so he stopped taking it immediately and now refuses to take any medication. I have read all the basic information about Tourette's, and now I am in search of personal experiences to help cope with this issue. I am on the verge of leaving him because I can't handle the Tourette's. I know that is terrible, and I definitely do not want to take that route. I need help, please!

 

Here are my questions:

Are there any alternative treatments for reducing tics? like certain vitamins or minerals? I briefly saw mention of this topic on the forum and would like to know more.

How does diet play a role in the onset and reduction of tics?

How do I tell him that I'm experiencing difficulty in dealing with his condition?

How do I keep my sanity when the sound he makes doesn't stop?

Is it wrong for me to feel this way?

Should I suggest that he see a doctor and try a different medication?

Why is his Tourette's getting worse with age when every article I've read about it indicates that it should get better?

 

Any information on how to reduce tics and dealing with a loved one who has Tourette's is greatly appreciate.

 

Thanks in advance!!

[kkver]

Glad to see you are trying to help some one you love and who needs help. I beleive 1st thing smokeing needs to go then you can put more attention . It will be slow and hard path on which both you need to go togather. I think you read Chemar's posts and some other people who have TS about vitamins and food and contols of ticks with TS. Many people on this forums has seen reduction in vocal tics with the use of acetyl-L-Carnitine and L-Carnitine .

 

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

 

 

 

 

Hi everyone,

 

I'm not sure if this is the right forum to turn to, but I desperately need help with my situation and will greatly appreciate advice anyone can give me.

 

One of my closest friends has Tourette's Syndrome. We have been friends for 9 years, and I never really noticed it because his tics were strictly simple motor ones that didn't happen very often. In fact he wasn't officially diagnosed with Tourette's until he was 20. It appears that his condition is getting worse with age. He is now 23. My friend and I started dating in October, and two weeks after this began, he developed a very vocal tic that has only gotten worse. It started off quiet and only occurred at random times, but now he makes this sound every few seconds. It's very loud and disruptive. He has never experienced a vocal tic this severe. I have noticed that the sound occurs very rapidly and more often when he is nervous or excited. I've also noticed that it occurs more frequently when we are alone or with my family. However, when we are with mutual friends, it is not as prominent; although it is still very noticable. I am wondering if he is anxious about dating me and being around my family and that is causing the increase in tics. I'm not sure if this is a factor, but my boyfriend is a smoker. He has tried to quit smoking since we started dating, and that too has made him very anxious.

 

I hate to say this, but his new tic, to put it bluntly, is driving me crazy. I understand that he cannot control it, but I don't know how to deal with this. Now we are having relationship issues because I find it incredibly difficult to be intimate with him when he is constantly making this sound. I am also relectunt to go to certain places, like movie theaters, with him because the sound is very disruptive. However, he does not care that his Tourette's effects other people. His response is that if "they don't like it, it's their problem." I also have a hard time dealing with this attitude.

 

My boyfriend has been on medication only once before a couple of years ago. I'm not sure of the dosage, but the medication was Haldol. He hated the way it made him feel, so he stopped taking it immediately and now refuses to take any medication. I have read all the basic information about Tourette's, and now I am in search of personal experiences to help cope with this issue. I am on the verge of leaving him because I can't handle the Tourette's. I know that is terrible, and I definitely do not want to take that route. I need help, please!

 

Here are my questions:

Are there any alternative treatments for reducing tics? like certain vitamins or minerals? I briefly saw mention of this topic on the forum and would like to know more.

How does diet play a role in the onset and reduction of tics?

How do I tell him that I'm experiencing difficulty in dealing with his condition?

How do I keep my sanity when the sound he makes doesn't stop?

Is it wrong for me to feel this way?

Should I suggest that he see a doctor and try a different medication?

Why is his Tourette's getting worse with age when every article I've read about it indicates that it should get better?

 

Any information on how to reduce tics and dealing with a loved one who has Tourette's is greatly appreciate.

 

Thanks in advance!!

[Irena]

Kimmie,

 

I am the last person who would recommend smoking as I hate it (my mother died of lung cancer) but your boyfriend's attepmts to quit smoking combined with the excitement of dating you and meeting your family may have resulted in increased tics.

 

Read this: http://www.tourette-syndrome.com/tsarticles.htm

 

Maybe nicotine patches would help...

 

Irena

[Chemar]

Hi Kimmie

I would like to commend you for trying to understand and to help your boyfriend.

 

I will to try to answer your questions:

Here are my questions:

Are there any alternative treatments for reducing tics? like certain vitamins or minerals? I briefly saw mention of this topic on the forum and would like to know more.

How does diet play a role in the onset and reduction of tics?

How do I tell him that I'm experiencing difficulty in dealing with his condition?

How do I keep my sanity when the sound he makes doesn't stop?

Is it wrong for me to feel this way?

Should I suggest that he see a doctor and try a different medication?

Why is his Tourette's getting worse with age when every article I've read about it indicates that it should get better?

 

If you follow the link in my signature you will see how alternative treatments helped my son move from very very severe Tourette Syndrome to it now being mild, and no longer interfering with his normal life. There is also a really good book available on the subject http://www.latitudes.org/book.html as well as a helpful article on identifying tic triggers http://www.latitudes.org/articles/finding_triggers.htm

 

Diet is IMO an essential component. If you read more here you will see how artificial food additives (coloring, sweeteners like aspartame/nutrasweet and sucralose/splenda, MSG, preservatives like sodium benzoate etc) can markedly trigger tics and OCD

Many of us have found that by improving diet and nutrition, things get a lot better

 

It is *very* hard to deal with some tics, and so your reaction is understandable, especially with loud vocal tics, but you need to remember that it is far worse for your boyfriend knowing (and yes, he knows) that others are affected by the tics.

The L-carnitine amino acid has proven helpful in many cases of vocal tics(including my son)

 

honestly, from a mom who saw Haldol and other medications produce severe side effects in her son I would urge that your boyfriend first try other means...

 

it is very possible that his tics are getting worse because of one or more of the triggers discussed in that article I linked to above. It may even be that he is trying to suppress the tics more, and that in itself usually leads to them becoming more intense

 

 

re the smoking.......I hope he is able to quit BUT he may well benefit from a nicotine patch.

As much as I hate to even say this, research has shown that nicotine has a tic reducing effect.

 

 

If he would be willing, there are a few things that may really help him to get started

1. the l-carnitine may help with the vocal tics

2.taking extra magnesium (preferably magnesium taurate, available at the Vitamin Shoppe stores or online....but also magnesium glycinate, or the Natural Calm drinkable magnesium citrate)

Magnesium has been found to be very calming for tics. Taking a bath in magnesium sulfate=Epsom salts (2 cups in a tub of warm water, soak for 20-30 min) can have a very rapid calming effect on tics too and promote good sleep

3. get rid of all artificial additives in diet and maybe check for food allergies (eg gluten or lactose etc)

 

 

there is so much more I would like to add here, but my time is limited right now...and so I just want to encourage you....I am married to a man with TS and one of our son's has it. And yes, it isnt always easy......but if you really love this young man, between the two of you, you *can* find ways to make this work. It takes dedication and care, but my family is proof positive that Tourette Syndrome does not have to negatively impact life.

 

I hope this helps a bit Kimmie, and that you will continue to ask questions here and hopefully be able to help your boyfriend