Can somebody help?

[Hopeful]

Hi all,

 

I am new to this forum and would just like to say it seems like a great support and advice network.

 

I am in my early teens and my girlfriend suffers from tourette syndrome. Since we met over a year ago her tics have gradually got worse. We have tried supplements such as bontech and went to see a an acupuncturist who we have recently stopped seeing as he was unable to help us. He told us that she had low magnesium and that her 'energy was going the wrong way'. Unfortunately, due to expense and no results we stopped going.

 

The problem is that my girlfriend is not hopeful that anything will help her which i cant really blame her for. And so whenever i suggest making diet changes to have a healthy diet etc she responds with 'food is the only thing that helps me cope im not gona change that as well'. The truth is i dont know what to do or where to start???

 

She is so depressed and its hard for me to see her the way she is. I am depserate to improve her condition even if its just so she has hope that things can get better. Her parents do not accept tourette and we are 'alone' in dealing with it and treating it.

 

We have found it very difficult coping with peoples reactions and when i am with her i am constantly on edge as I know people will stare and i feel that i have to say something. When i am not with her I worry day and nite that someone will upset her and that she may result to self harm as she has in the past.

 

CAn somebody help? Perhaps suggest a starting point? It would be great if sufferers of tourette could advise me how to encourage her as I can not possibly understand exactly what she goes through day in day out.

 

THank you

 

HOPEFUL

[Guest Diane]

Hopeful,

It's nice that your girlfriend has you who cares about her so much.

 

You didn't mention if your girlfriend had tried any medications for her TS symptoms. I hesitate to even suggest this because I know this site advocates non-medicinal approaches to treating TS, but if your girlfriend is so despondent that she may harm herself, perhaps she needs something that will help her symptoms more quickly, she probably should see a doctor right away to get some good advice. Perhaps a medication can help her until she feels strong and willing enough to try a diet change, which at the present time may seem overwhelming to her.

 

My husband tried some medications, some of which definitely gave him some relief, when he was in his teens. It seems that the teens (with hormones) can be the worst time for TS sufferers. After a while he decided not to use the medication any more, and tried dietary changes, also with some success. They have many more medications available today, than when he was younger. If she gets some relief from a medication then she may be willing to try a diet change and slowly subside the medication.

But I think her first step should be to see a doctor experienced with Tourettes and go from there. Perhaps her family doctor can refer her to one. Good luck

 

Diane

[Chemar]

Hi Hopeful

 

your girlfriend definitely needs to try to get help. Can she talk to a counsellor at school who can maybe get her parents to "accept Tourettes" by explaining it to them?

 

I can see why it must be very hard for her if her parents arent helping her.

 

Magnesium is VERY beneficial in tic disorders and so it would be very good for her to take some alonmg with a good daily multivitamin supplement.

 

Some people just dont react well to the bontech products, tho others do so I hope she wont be totally put off trying healthy stuff.

 

although I am not a big medication fan, still some people seem to be helped by a new med called Abilify.

 

There are supplements that also help with depression but I am hesitant to mention anyhting because your girlfriend is a minor and really should be receiving professional help with all this.

 

I do hope she will maybe talk to a school guidance counsellor to try to get her parents to provide her with the help she needs,

 

She is blessed to have you to care for her.

Please do stay in touch and we will all try to provide all the support we can

 

 

Also, maybe visit these 2 sites to help you learn more about TS

 

http://www.tourettesyndrome.net

 

and

 

http://www.lifesatwitch.com

 

[Chemar]

Hopeful

 

I just wanted to add to my post above that if you think it would help I can ask my son, who is 15, to reply to any PMs you may want to send me with specific questions on how to encourage her.

 

He used to have very severe TS and OCD and depression but is doing just wonderfully since beginning a supplement plan (not bontech) 4 years ago

 

he really has learned a lot about what triggers the tics and how to cope so maybe he can help best, especially as you all are probably around the same age

 

[mmazz]

I agree with all who responded, your girlfriend is very lucky to have you to care so much for her. My heart broke reading your post. So young but well beyond your years. Many here supplement with vitamins, herbs and minerals with much success but from what I read supplements cannot make great strides when diet and environment are not altered. Boosting the immune system is key and without knowing if you have issues like yeast that can stop vitamin assemilation, supplementation will not work and with every attempt that does not work you feel even worse. I believe mind, body and spirit are truly important. Your girlfriend needs counseling now!! She needs family and friends to support her. Mind and spiritual uplifting will bring about the want to change ones body. Many have posted that once their diet/environmental triggers were cleaned up the mood/personality changed- I think that is the first sign of healing. Lowering the anxiety/stress will help greatly. Good luck to you and your girlfriend...you are an extrodinary person and your girlfriend is lucky to have you in her corner.

[Susan]

Maybe your girlfriends parents don't support a tourette diagnosis because she is diagnosising herself. If she has insurance, what is stopping her from seeking a professional medical diagnosis? If there is no TS experienced doctor on her medical plan, than gather information on tourettes and take it to her general practitioner and talk to him.

 

My son is 11 and for almost a year I tried as much natural remedies as possible and they helped a little, but not enough to stop him from licking his desk in school and keep him paying attention long enough to finish his work. We started him on Abilify, he is only on 2.5 mg a day and he went from the school not being able to grade him to all A's and B's and lots of friends now calling the house. I found with doctors that are uneducated in tourettes, you must take contol yourself and ask for what you think is best to try. This medication is not cheap, my co-pay is 50$ a month (200$ a month supply if no insurance and that would be the lowest dose) and you need to read all the side effects and be under a doctors care.

 

I do not believe that diet is the cause of tourettes; however, believe it is the cause of making tics or emotional behavior worse. It takes dedication to watch what you eat and it will take money and support from her parents because vitimans and tests are expensive. She can do some of it on her own without cost and I would start with the depression because this alone can prevent her emotionally from carrying through with taking care of herself. Sounds to me like the depression is worse than the tics because she could harm herself, but watch these doctors that want to prescribe several medications, one for each of her symptoms. I just got back from a tourettes family camp in Tampa, some of these kids are on 4 or 5 meds. Some doctors are splitters and some lumpers (meaning my doctor lumps my sons OCD, ADD and depression as TS) and he is on one med which helps all of them and I still see from time to time very little of any of them but remember medication is not to make you get rid of depression all time, that's not normal.

 

Good Luck

[Sheila]

Hi, everyone--The large print for Abilify in Susan's post caught my eye! As anyone who knows ACN is aware, we are not on an anti-drug crusade. Conventional medications can help many people, and it's always a difficult decision when weighing the benefits versus the burdens or side effects of a strong medication.

 

Susan mentioned that it is important to be aware of the potential side effects of this medication, which is so true--so I have included a link to an updated drug insert below.

 

http://www.fda.gov/medwatch/SAFETY/2004/abilify_pi.pdf

 

Last year, the FDA had Abilify revise their side effects to include the fact that the drug can cause diabetes or hyperglycemia in addition to several other serious concerns. Also, it has not been tested on children which means families have to be extra cautious.

 

Again, I know drugs have their place and can bring much needed relief in crisis times. We live in a complicated world, and there are not easy answers.

 

Wishing everyone the best in their ongoing efforts, and thanks to all of you for participating in our forum! Sheila

[Hopeful]

Hi all,

 

Firstly, I would like to thank you all ever so much for our replies. I made a mistake in my original post i meant to write 'i am in my early twenties'. My girlfriend is almost 20 and I apologise as many of you thought that she was a minor.

 

We see a clinical psychologist sometimes together and have been doing so for the last few months. My girlfriends TS has been diagnosed by an expert who was of very little help and suggested medication but we were both not willing as there were many side effects.

 

I read all your posts and will suggest to my girlfriend to look to you guys for further support and I know that she did use to post on here. I love my girlfriend very much but find it difficult as she can be so unreasonable sometimes, she gets angry and accuses me of not caring and not loving her. I try to make her happy and i will continue to do so no matter what but I dont know how to be there for her and make her understand that I am not ashamed or embarrassed of her in any way. And that i could only of dreamt of meeting someone so full of life. It is through seeing her pain physical and mental that i seek help and i know that by being strong and hopeful things will improve. Im still not sure what the next step should be. her parents are slowly accepting it which is great although there is still a long way to go.

 

I dont want her to go on medication as there are many side effects but i will look in to Abilify. We are in the Uk and no one seems to know about ts which only makes it harder.

 

I wrote a poem (its not that good). I hope some of you can relate to it...(if i have offended anyone i apologise it is most definately not my intention)

 

Tourette.

 

It is you who feels all the pain, the sharp stares the tormenting looks,

centre of attention when you wish you were invisible,

everyone seems to be looking at you but no1 seems to see your pain,

you wish tourette would jus leave you, you have suffered enough,

a hundred times you ask yourself why me, why do i suffer.

 

You do not suffer alone, I love you and i see your pain,

your bruises from the violent tics, the horrid looks from your noises,

the lonely tears falling from your eyes, i sit there unable to say a thing,

what can i say, what can i do, i only wish i could take your pain.

 

I lay there at nite when you think im sleeping staring at your peaceful smile,

tourette cant get you when you sleep i hold you tight and cant help but weep.

Awake in the morning another day i know itl be tough and things may get bad,

but hurry home as without you my angel my life shall be sad.

 

I know you think i am ashamed but how can i make you understand,

I am proud that you are mine and that in my arms you will always stand,

I am urs as you are mine united and strong we both shall stand,

Tourette is ur pain, i am your love, by giving you love il try to take the pain,

it may be tough there may be tears but leaving you is one thing that you need never fear.

 

I write this poem for all you suffering at the hands of tourette,

you are so strong you inspire us all to make everyday a living smile,

but do not think that you are alone our tears are there your pain is ours,

together we stand to face the world.

 

Dedicated to the angel in my life..my truly beautiful girlfriend and all those suffering from tourette and those who help, love and share to make it just that little bit easier.

 

Hopeful

[kim]

Hopeful,

 

You made me cry, but not because of Tourette Syndrome, but because of the beauty of the love you feel in the face of such adversity. For such young people, you have the admiration of everyone here I'm sure. What has made her life so difficult, has also given her a rare gift; truly knowing unconditional love.

 

kim