Any new Tourettes research?

[lynnie1264]

HI everyone.

I've been trying to find what research is currently under way to find relief/cure for TS. Everything seems to be outdated. I am hoping that TS is on a high priority list and not just lost somewhere.

I'd appreciate any info on this. Thanks, Lyn.

[guy123]

HI everyone.

I've been trying to find what research is currently under way to find relief/cure for TS. Everything seems to be outdated. I am hoping that TS is on a high priority list and not just lost somewhere.

I'd appreciate any info on this. Thanks, Lyn.

 

Hi,

 

I've been doing a ton of research on medications that may help to alleviate my hard blinking tic. It seems that most medications fall into one of a few categories, each of which have their own drawbacks. I am compiling all my research into a big document which I will post here when I am done. Basically the classifications of medications are as follows:

 

Anti-psychotics/neuroleptics - seem to be effective at reducing tics but have the potential for horrible, irreversable side-effects

 

SSRIs - may help OCD-based tics but have their own host of terrible side-effects (altho not irreversable; they stop when you come off the medication)

 

High blood pressure medication - such as Guanfacine (Tenex). Seems to also reduce tics in some people. Can have bad rebound effects if you stop using abruptly

 

Dopamine inhibitors/blockers - may work on tics (I just found out about these and am still researching)

 

Norepinephrine reuptake inhibitors (I also just found out about these and am still researching). Note however that some studies I've found suggest that the reason SSRIs may be effective in reducing tics is because they reduce the amount of norepinephrine available, so it sounds like it may be a similar mechanism to how norepinephrine reuptake inhibitors may work.

 

Marinol - a THC derivative. THC is found in Marijuana. Depending on your views on this drug you may have a preconception of using it as a medicine. Marinol is available in pill form and doesn't require smoking or inhaling anything. There are studies suggesting that Marinol and Marijuana have extremely beneficial results for sufferers of TS and tics.

 

Natural treatments - there is a lot of information here about vitamin/mineral/amino acid supplements and combinations that seem to be effective for sufferers of TS.

[lynnie1264]

Thanks for that. Looks like you've been very busy!!

 

Do you know what the medical researchers are doing? In any country is there funding for this research?

 

I heard today that they've found new hope in a drug to treat Parkinsons... I heard them say "it can stop the tics" so ofcourse my ears pricked up... I missed a lot of it but I did hear them say it could help other disorders, and I thought it may be Tourettes.

 

I just hope that medical researchers are really looking into it and something can be done to help the people who need it.

 

thanks, Lyn

[Chemar]

HI everyone.

I've been trying to find what research is currently under way to find relief/cure for TS. Everything seems to be outdated. I am hoping that TS is on a high priority list and not just lost somewhere.

I'd appreciate any info on this. Thanks, Lyn.

 

The TSA has up to date research info

http://www.tsa-usa.org/research/medsciR.html

[lynnie1264]

Thankyou Chemar. Very interesting. I'm wondering if it gets the funding it deserves? I know there are alot of things out there that need curing/helping... I just hope TS is up there with the best of them.

[guy123]

Thanks for that. Looks like you've been very busy!!

 

I have been. My motivation comes from the fact that I am annoyed as heck (I originally said something else but the forum replaced it with #s, lol oops!) with this blinking tic. I do not accept my present state as an acceptable way to go through life and therefore will find whatever it takes to get rid of it. Part of my OCD is perfectionism (my mom says it started when I was a little kid; if I couldn't do something perfectly I didn't want to do it at all, lol) which has also manifested itself in other ways (body dysmorphic disorder - I constantly see myself as too skinny and weak-looking, hence my interest in bodybuilding and diet), but sometimes it can have beneficial effects such as when I'm interested in something I will go crazy studying until I understand everything about it. In this case I have a vested interest (ie. fixing myself) so I'm interested in learning everything about tics up to and including finding an effective cure with acceptable or no side effects. For the record I don't consider tardive dyskinesia (anti-psychotics/neuroleptics) or loss of sex drive (SSRIs) to be "acceptable" side effects. Having to take a pill every day for the rest of my life to prevent tics is acceptable. Taking a pill for a finite amount of time until it "corrects" whatever is wrong in my brain and then not having to take it anymore for the rest of my life is preferable however probably less likely.

 

Honestly, I should've majored in biochem

 

Do you know what the medical researchers are doing? In any country is there funding for this research?

Not sure.

 

I heard today that they've found new hope in a drug to treat Parkinsons... I heard them say "it can stop the tics" so ofcourse my ears pricked up... I missed a lot of it but I did hear them say it could help other disorders, and I thought it may be Tourettes.

 

Did you hear the name of this drug?

[lynnie1264]

Hi again. No I didn't catch the name. Apparently some people with parkinsons have trialed it and they said it could be on sale before 4 yrs. {which is still good if it works} As I said it was mainly about parkinsons, however when it said about stopping the tics and saying it could help people with other disordersI really took notice. I even tried to google it but didn't get much. I might hear it on the news tonight and I'll post again. I'm in Australia and I'm not sure where this was "discovered" but with something like that it is usually world news.

 

I think we need people like you who are dedicated to finding relief/cure. Who knows what can be uncovered by looking into it?

Good luck, and I'll see if it's on the news tonight... bye for now,

Lyn

[guy123]

Hi again. No I didn't catch the name. Apparently some people with parkinsons have trialed it and they said it could be on sale before 4 yrs. {which is still good if it works} As I said it was mainly about parkinsons, however when it said about stopping the tics and saying it could help people with other disordersI really took notice. I even tried to google it but didn't get much. I might hear it on the news tonight and I'll post again. I'm in Australia and I'm not sure where this was "discovered" but with something like that it is usually world news.

 

No problem. Feel free to post it here if you find out, tho

 

I think we need people like you who are dedicated to finding relief/cure. Who knows what can be uncovered by looking into it?

 

Thanks. Too bad I'm not a scientist or biochemist. But if it's out there on the internet I will find it (except for those medical study sites where they want you to pay to read their articles. No thanks).

 

 

Here's some good info I found on traditional treatments with mention of cannabinoids.

 

Go here (google books online) and read pages 368, 369, and 370. It should take you to page 368 when you click this link:

 

http://books.google.com/books?id=0XijYbEuo...esult#PPA367,M1

 

 

Oh yeah, one other treatment I didn't mention in my initial reply but that is mentioned in that link is Botox injections.

 

Now at first I was thinking "NO WAY." Botox freezes the muscle. I was imagining if I had the urge to blink hard but was unable to. I would probably go crazy in less than 30 seconds. But then they said that it is also effective in relieving the premonitory sensation that precedes the tic. THAT is surprising. But consider if it didn't do that... Botox injections least for 3-4 months... it would be absolute hell during that time which would almost make me not consider it.

[Chemar]

just an FYI that PWP (people with Parkinson's Disease) have the OPPOSITE from those with TS....TS do *NOT* want elevated dopamine as it is that which triggers the tics. People with Parkinson's *DO* want extra dopamine as they are deficient in it and that is what causes their neuromuscular tremors etc

 

so a drug helpful for Parkinson's is unlikely to be beneficial for TS tics, but I giess one would need more info on this to know for sure

[guy123]

just an FYI that PWP (people with Parkinson's Disease) have the OPPOSITE from those with TS....TS do *NOT* want elevated dopamine as it is that which triggers the tics. People with Parkinson's *DO* want extra dopamine as they are deficient in it and that is what causes their neuromuscular tremors etc

 

so a drug helpful for Parkinson's is unlikely to be beneficial for TS tics, but I giess one would need more info on this to know for sure

 

Very good info, Chemar. Thanks.

 

Is it possible to have a brain scan or something and find out what chemicals you're high/low in?

[Chemar]

we have info on the essential threads sticky at the top of the board that may be helpful to you

 

here is one re neurotransmitter testing

http://www.latitudes.org/forums/index.php?...ost&p=23875

 

there is also info on testing levels of vitamins, minerals etc (spectracell) somewhere on that thread

[lynnie1264]

Hello all. Chemar, I'm sorry I didn't realise they were the opposite. I just took more notice when they said it could stop other tic disorders. Who knows though, maybe they can reverse it and come up with something.

I didn't catch the name last night on the news either, walked in on the end of it. My husband was watching it { i hadn't told him at that stage} and got abit excited as he thought the same.

As I said, if they can come up with that maybe they can find a way to reverse the med.

Sorry for any confusion though.... bye for now, Lyn.

[VTXRaider]

Thanks for that. Looks like you've been very busy!!

 

Do you know what the medical researchers are doing? In any country is there funding for this research?

 

I heard today that they've found new hope in a drug to treat Parkinsons... I heard them say "it can stop the tics" so ofcourse my ears pricked up... I missed a lot of it but I did hear them say it could help other disorders, and I thought it may be Tourettes.

 

I just hope that medical researchers are really looking into it and something can be done to help the people who need it.

 

thanks, Lyn

 

I believe the drug you are referring to is Tetrabenazine. Here in the US it's classified as experimental and can only be prescribed by Baylor College of Medicine. It's currently being fast tracked by the FDA and it's primary use has been with Parkinson's patients. My 9 year old Tourettes DX son has been on this for about a year as part of a clinical trial. We had originally tried diet, supplements ect. to no avail. He was prescribed Tenex and we reluctantly agreed. The Tenex did offer some relief to his tics but only for about six months. His Tics started getting worse and we considered taking him out of school when our local Dr's prescribed Risperidone and Clonidine as the next fix. My wife and I decided against changing meds and kept working on diet and supplements. I was not willing to just start trying a bunch of medications being prescribed by local Dr's who in my opinion knew less about my son's condition than myself. As my son's conditioned worsened I got referred to Mayo Clinic to meet with their team of pediatric neurologists. The main Dr. was very open with us and was very receptive to alternative approaches at dealing with my son's TS. She told me about Tetrabenazine and the success Baylor had been having with it, in not only Parkinson patients but with TS and many other movement disorders as well. My wife and I agreed that it was something our family should consider. The medicine is not covered by our insurance because it's not FDA approved yet. Any follow-up appointments have to be done in Houston which is 1300 miles away and plane ride for us. The results so far have been AMAZING! My son use to tic about every 5 seconds. As I said we were considering pulling him from school it was getting so bad. His tics are all but gone and there have been no side effects. It's nice to finally let my little boy be a little boy again without limiting him from the things that he enjoys because I thought they may have been contributing to his condition.

 

As you can see this is my first post. While I come to this site just about everyday I am more of a reader than a poster. I share in many of your experiences and would like to thank many of you for helping me and my son. I have learned so much and I owe it this board

 

Rick

[lynnie1264]

Welcome VTXRAIDER!

 

Thankyou very much for the info. I hope this medicine continues to be successful. It's great that your son has had such great success on it. Do you know when it will be readilly available ? The good thing is that he also has no side effects, sounds like a dream come true. Sooner or later they have to get somewhere wih research, don't they?

 

Really I am so happy for you.

 

Keep us posted, we'd all be interested in how it progresses. My son only has mild TS now, but I want to be armed with good info if the time ever comes when more intervention is needed.

 

Thankyou,

Lyn

[Chemar]

thanks for that info Rick and I am glad to hear this is working for your child

 

according to Wiki this drug causes early breakdown of dopamine which may be why it is helpful for TS

 

However..................

 

wiki mentions it having a SIDE EFFECT of parkinsonism!! so I am surprised you have heard it is used *for* parkinsons??? maybe I am missing something???

 

Wiki also mentions *DEPRESSION* as a major side effect of this drug, along with other side effects

 

 

http://en.wikipedia.org/wiki/Tetrabenazine

 

I guess after our horrid experiences with pharmaceuticals in both my husband and my son...I tend to look deeply at potential short term *and* long term side effects first so sorry if I appear negative here.