Hi...I'm new here and my name is Gary

[Gary]

Hi everyone...my name is Gary and I am 21 years old from Illinois. To make a long story short (yeah right...) I'm on Orap and Klonopin for anxiety and the Orap is for the TS. I don't get the results I want from the Orap for my vocal tics which is cursing, racial slurs, making noises etc. I say it doesn't help...and it doesn't...but at the same time, take me off of it and I'll scream my head off. I've been on everything under the sun. To name a few...Clonidine, Risperdal. Haldol, Neurontin, Zyprexa, Seroquel etc etc. I've been on other things too such as Topamax and Celexa and Abilify, Paxil, Zoloft, Wellbutrin, Luvox, Tenex and the list goes on and on and I've never really found any relief from any of these except Risperdal, Tenex and Prozac (forgot to mention Prozac) but I was around 10 or younger and I developed a bed-wetting thing and I had to get off of it. I might get some flack for this but most of the TS meds are weight-gaining meds and I've battled with weight since I was 10 years old and got on Orap when my vocal tics first started becoming noticable. So anyone who has battled with weight should understand my position. Its almost like I'd rather be skinny or not overweight over having control over my tics and I know that sounds crazy but there is no such pill. It seems like you are either fat and have good tics or you're skinny and have bad tics and there is no happy medium. So this is where I wonder about alternative methods such as supplements etc. I was given some advice on them and what to use but didn't follow directions properly and didn't have good results because I didn't follow the person's advice. I was taking, Super B Complex and Magnesium and Calcium, twice a day, Biotin and I think thats it. I took everything in the morning with my Orap and Klonopin except the Calcium...since that was twice a day I took one in the morning along with everything else...and took the second calcium pill in the evening/before bed. I have also tried "alternative methods" in the past if you want to call it that with things like St. Johns Wart and Serenity which was a purple liquid you mix with orange juice and drink and its supposed to calm you hence the name serenity. Anyway...its been a long time since I have had an EKG or any bloodwork and I REALLY need to have that done to make sure everything and all levels are normal before I try anything else. Next time I see my doctor I'm asking for an EKG and a blood test to check liver and kidney, thyroid etc. But I have been on Orap for basically 11 years. I did go off the Orap a couple times and tried other things but they didn't work out and my doctors always put me right back on Orap when something didn't work out. Any advice or ideas would be appreciated.

 

Thanks for listening everyone.

 

Sincerely,

Gary

(Told you I can't make a long story short )

[Andy]

Hi Gary there are people on this forum who have gone what you are going thru and there are people here who took their kids off meds and have had wonderful results. I do not feel qualified myself to give you any advice right now but I did want to take the time to say hi and to let you know to check up on this website for I am sure that once Thanksgiving is over you will have better posts then mine to read. By the way, I thought you did a good job with your story. It was direct and to the point yet stayed human.

[ad_ccl]

Hi Gary,

 

Chemar's posts are the one's you should look out for - you can do a search for her one on "what helped my son" She has a list of the supplements - and she has had amazing success after taking her son off presciption meds. Many have also had great success with food elimination.

[Gary]

Hi Gary there are people on this forum who have gone what you are going thru and there are people here who took their kids off meds and have had wonderful results. I do not feel qualified myself to give you any advice right now but I did want to take the time to say hi and to let you know to check up on this website for I am sure that once Thanksgiving is over you will have better posts then mine to read. By the way, I thought you did a good job with your story. It was direct and to the point yet stayed human.

 

Hi Andy...thank you for your response. I appreciate it. I heard about this site through a friend so I decided to check it out. I really have run out of options because medication don't work for me. I am having brain surgery at the beginning of the year. Its called Deep Brain Stimulation and I've been accepted into the study. I have also developed some pretty horrible motor tics in the meantime so the worse my tics are when I go for the evaluation the better chance I have of getting the surgery. Its been used many times on Parkinson's patients but never on a tourette patient before Jeff Matovic. I don't know if you are allowed to give out links but if we are not allowed to someone please let me know. Jeff Matovic and his story and video of before and after the surgery can be found at www.uhhs.com and just search around for Tourette Syndrome or studies and watch his video. I'm telling this to you but everyone as well because besides the wonderful results people have had with supplements, this looks very promising...Jeff's story is basically a miracle story. So if the supplements don't work I still have the surgery to look forward to. Then all hope is gone for me. I understand that you don't feel qualified to give me advice and that's fine and I respect that but I appreciate you writing back and saying hi. Your post was fine. You said your sure I'll have "better posts to read than yours..." well your post was very nice and helpful, welcoming etc so don't cut yourself short man. Where are you from and how old are you? If you don't mind me asking. And thanks for the compliments on my story. I have been told I'm good with words so thanks and nice to meet you.

 

Gary

 

Hi Gary,

 

Chemar's posts are the one's you should look out for - you can do a search for her one on "what helped my son" She has a list of the supplements - and she has had amazing success after taking her son off presciption meds. Many have also had great success with food elimination.

 

 

Hi and thank you for your response. I will have to check out Chemar's posts for sure. Can someone tell me how to use this forum? I don't think I'm doing it right? I'm hitting reply at the bottom of the person's post I am replying to and it puts this quote and the date and time etc. What do I need to do and am I doing everything okay? Help!! lol Thanks again.

 

Gary

[Andy]

Hi Gary. I am a father of three kids of which the oldest has been labeled with TS. He first became sick at age 2 after a vaccination shot and stuff has happened since then. We are currently treating him with the assistance of a Dan Doctor. He has been tested to have various heavy metal poisoning, delayed food allergies, yeast and fungus infection in his gut as well as not having enough natural guthione in his body to clean itself out. We feel that his TS was induced from mercury being in the vacination shot as a preservative and damaging his body. However, we understand that there could be many causes of TS and that there could be more then one treatment that could help people depending on what they need.

 

My son is on a ton of supplements, he gets once a month DMPS/Gluthione/NAC IV's, he takes epsolm salt baths, he is on a restrictive diet based upon his food allergies, he is taking probiotics for his gut, he has weekend treatments of DMSA for detoxing, and he gets twice a day gluthione lotion rubs. He is also constantly tested to monitor his blood cell count because of the detoxing and other tests to see what his body chemistry is.

 

My son has made wonderful gains but we also have had set backs along the way.

We love our son and consider ourselves blessed to have him and will try anything we could to make his life easier.

 

If I remember correctly , the person that you speak of who has had the deep brain stimulation posted here at this site a year or so ago. If you look up Jeff Matovic under members, you might come across some of his posts. It was not that many but the content of them impressed me. Don't sweat not being an ace with this forum. Since I came back to it I have noticed that its layout is a little different from what I was used to and I have been fumbling around here myself. In time and with practice I am sure we both get a handle on it.

 

Please continue to post. I've been away for awhile due to stuff but now I am back and I usually check in once a week to see how everyone is doing, to learn something knew, and to share my own information when I can.

[Guest]

Hi Gary,

 

Welcome to the forum. I have been on the majority of those medications when I was little. I'm 20 now with mild tics. I had very severe tics when I was younger. I took Clonidine and Risperdal for 10 years after trying a number of the other meds you listed. I've been medication free for almost 6 months and doctors and my family didn't think it was possible. I take several supplements, allergy shots, acupuncture/chinese cupping, and chelation therapy for heavy metals. When you've went off Orap before have you went off slowly? That was always one of the biggest mistakes doctors made with me. They had me just all of the sudden stop a medication instead of going off slowly which caused a mess. I took a very long time going off both risperdal and clonidine (one at a time) to hopefully have positive results which I did. The other thing is how long were you off of Orap because sometimes the first 2 weeks of being off the med can be rough, but then things get better. We we're usually told to give it a couple week before deciding I needed to go back on the med.

 

Carolyn