Wondering if we should try medication

[Rick43]

Hi Rick, we have had great results with Progressive Multi vit/mineral for our son. They do have an adult version although I can only speak for the children's first hand. Chris and Lisa both use Kirkman Spectrum Complete for their kids and have also had good reports as far as I've seen.

Good move on the soap to rule out scents etc for triggers. Our son and to a lesser degree my husband definately do better when ALL things are as natural as possible. Dishwasher det., laundry soap, cleaners, even toothpast for our son! It doesn't hurt to go that route regardless so at least your possible triggers are diminished some.

Watch for pesticides on food too, if you don't already go organic. The diet changes alone were good but saw much bigger results when we got off town water and went as local and organic as possible for our son. I'll compare the adult Progressive to the kids one just for curiousity when I get a chance. Chris can probably give you more on the Kirkman multi.

Best wishes,

 

Megan

 

Just noticed I was repeating myself on the natural cleaners...sorry to be redundant...

 

Thanks Megan

I will check out the progressive multi and also the kirkman spectrum complete multi for adults. I didn't even think about the toothpaste or dishwasher soap. I do not go 100% organic, but try to whenever I can. I really like the idea of 100% organic/local and using only bottled water - but that sounds so difficult to maintain - not sure how you'd ever go out to eat or go on vacation. But again, I want results badly, so will keep trying.

 

However, I know there is more I need to do than just multi's. What about B12, grapeseed extract, fish and/or flaxseed oil, and even the cal/mag/zinc combo that Chemar had stated her son also used to take.

 

what I currently take:

 

bontech multi

bontech grapeseed

B12

D3

cal/mag/zinc combo (just stopped this one due to soy)

natural calm 1 tsp a day (moving to 2x a day)

bontech fishoil - stopped this a week ago - considering flaxseed instead

5HTP for OCD

Sam-e for OCD

inositol - stopped this completely. (for OCD)

 

OCD seems to generally be under control now (thank goodness).

[mommyfor4]

Hey Rick,

Most of these are in our son's multi already so for us we don't supplement as addition. For him he does best getting it from the foods he eats, wild salmon, avocadoes, lots of spinach and kale etc.

I guess what I'm trying to say is that for us it took starting from scratch with the supps,

we removed everything and started the multi and began to see good results, added back the original Natural Calm (no flavoured ones-they increased his tics), for us adding fish oil and D3 did not work, his tics again increased. Although for some they are really beneficial! I think if you can start slow you will have a good base for what is working well and what should be avoided.

I wouldn't do this with my son as he is only 9, but maybe a naturopath monitored fast might be beneficial and then start back with the most simple foods with the least chance of sensitivities. But I think you might want guidance from a good nat. dr. on this one. There are case studies of people fasting and tics as much as going away, so it could be beneficial to finding triggers easier as you are unsure that the diet is helping.

Yes eating out and vacation is not always easy, and some rules unfortunately are bent slightly, but it becomes easier. Many places are willing to work with the diet if requested and it just means some pre-planning. You may not get organic but can at least avoid other triggers.

I really do hope some of this helps!

 

Megan

[Rick43]

Hey Rick,

Most of these are in our son's multi already so for us we don't supplement as addition. For him he does best getting it from the foods he eats, wild salmon, avocadoes, lots of spinach and kale etc.

I guess what I'm trying to say is that for us it took starting from scratch with the supps,

we removed everything and started the multi and began to see good results, added back the original Natural Calm (no flavoured ones-they increased his tics), for us adding fish oil and D3 did not work, his tics again increased. Although for some they are really beneficial! I think if you can start slow you will have a good base for what is working well and what should be avoided.

I wouldn't do this with my son as he is only 9, but maybe a naturopath monitored fast might be beneficial and then start back with the most simple foods with the least chance of sensitivities. But I think you might want guidance from a good nat. dr. on this one. There are case studies of people fasting and tics as much as going away, so it could be beneficial to finding triggers easier as you are unsure that the diet is helping.

Yes eating out and vacation is not always easy, and some rules unfortunately are bent slightly, but it becomes easier. Many places are willing to work with the diet if requested and it just means some pre-planning. You may not get organic but can at least avoid other triggers.

I really do hope some of this helps!

 

Megan

 

Megan,

thanks again for your continued replies. I really like your ideas. I did break down yesterday and called my old neurologist to discuss Tenex and/or Clonidine. She will be calling me back, as she wasn't available, but I was desperate...

 

so if I read your post correctly, the only supps your son takes are the multis (the brand you use). I know you recently challenged fish oil and D3 - which made me recently drop fish oil - still thinking about if I'll drop D3 since I know I'm a bit low there (not much, and in summer it'll be no issue).

 

I agree that the fasting may not be a bad idea - my wife also wants me to take the psyllium husks (spelling?) for a week to detox, but I haven't been able to get myself to do it, only because they are just so horrible. I probably should just do it.

 

I feel like I'm already super careful w/ my diet. No gluten, no soy, limit salicylates as much as possible (which is a tough one!), no caffeine, no alcohol, limit sugar, and limited dairy (egg is gluten free pancake mix, and creamer for decaff coffee) - probably dairy in gluten free bread too. And yes, while not perfect, I do try to eat organic, but I'm definitely not perfect.

 

I do however drink regular tap water - maybe I need to buy one of those spendy purifiers - couldn't hurt. Not sure if others have gone that route or not - as my understanding is that even bottled water does not necessarily mean purified.

 

I think what I am going to do is look into your brand of multis and Chris's brand, and see which looks most appropriate for an adult. Will also drop all the bontech stuff and start from scratch, adding in as needed.

 

When I lost all faith in this diet over the last couple of weeks, I knew it made sense to at least jump on the latitudes board to seek some advice before jumping back on that old tetrabenazine bandwagon. (Good stuff, but strong, and I'm still convinced it played a big role in turning on OCD to the high, intolerable level)

 

Rick

[Rick43]

Hey Rick,

Most of these are in our son's multi already so for us we don't supplement as addition. For him he does best getting it from the foods he eats, wild salmon, avocadoes, lots of spinach and kale etc.

I guess what I'm trying to say is that for us it took starting from scratch with the supps,

we removed everything and started the multi and began to see good results, added back the original Natural Calm (no flavoured ones-they increased his tics), for us adding fish oil and D3 did not work, his tics again increased. Although for some they are really beneficial! I think if you can start slow you will have a good base for what is working well and what should be avoided.

I wouldn't do this with my son as he is only 9, but maybe a naturopath monitored fast might be beneficial and then start back with the most simple foods with the least chance of sensitivities. But I think you might want guidance from a good nat. dr. on this one. There are case studies of people fasting and tics as much as going away, so it could be beneficial to finding triggers easier as you are unsure that the diet is helping.

Yes eating out and vacation is not always easy, and some rules unfortunately are bent slightly, but it becomes easier. Many places are willing to work with the diet if requested and it just means some pre-planning. You may not get organic but can at least avoid other triggers.

I really do hope some of this helps!

 

Megan

 

Megan,

thanks again for your continued replies. I really like your ideas. I did break down yesterday and called my old neurologist to discuss Tenex and/or Clonidine. She will be calling me back, as she wasn't available, but I was desperate...

 

so if I read your post correctly, the only supps your son takes are the multis (the brand you use). I know you recently challenged fish oil and D3 - which made me recently drop fish oil - still thinking about if I'll drop D3 since I know I'm a bit low there (not much, and in summer it'll be no issue).

 

I agree that the fasting may not be a bad idea - my wife also wants me to take the psyllium husks (spelling?) for a week to detox, but I haven't been able to get myself to do it, only because they are just so horrible. I probably should just do it.

 

I feel like I'm already super careful w/ my diet. No gluten, no soy, limit salicylates as much as possible (which is a tough one!), no caffeine, no alcohol, limit sugar, and limited dairy (egg is gluten free pancake mix, and creamer for decaff coffee) - probably dairy in gluten free bread too. And yes, while not perfect, I do try to eat organic, but I'm definitely not perfect.

 

I do however drink regular tap water - maybe I need to buy one of those spendy purifiers - couldn't hurt. Not sure if others have gone that route or not - as my understanding is that even bottled water does not necessarily mean purified.

 

I think what I am going to do is look into your brand of multis and Chris's brand, and see which looks most appropriate for an adult. Will also drop all the bontech stuff and start from scratch, adding in as needed.

 

When I lost all faith in this diet over the last couple of weeks, I knew it made sense to at least jump on the latitudes board to seek some advice before jumping back on that old tetrabenazine bandwagon. (Good stuff, but strong, and I'm still convinced it played a big role in turning on OCD to the high, intolerable level)

 

Rick

 

Megan & Chris,

 

i dug around trying to find both the progressive naturals and kirkman spectrum complete in capsules as was only able to find the progressive, so I ended up ordering that out of canada. For some reason, the kirkman website says they stopped selling the capsules for the spectrum complete.

 

I wanted to ask how many of the multis your kids take a day -- since on the bontech program, she was having me take 20 pills a day of her TS control. The multis seemed to suggest only a few a day - but not sure if you take more given its for TS

 

In addition to that, I also want to further explore mold and or cleaners -- as my wife (and me to a degree) are starting to wonder if maybe there is somethign to the mold issue - since many of you have brought that up before. Originally, I was hesitant, because I don't believe we live in a moldy house, and we are pretty clean, so it just seemed bizarre. But, we do use a housekeeper every 2 weeks, so maybe they are also using a chemical for our hardwood floors that they shouldn't. I don't know.

 

lastly, my wife is strongly encouraging me to go back to acupuncture - she seems very convinced that it made a big difference - I am not so sure. But I'm thinking about it, because as crazy as this sounds, the TS seems to be better (not perfect) while I am at work. it makes me wonder if having 3 young kids stresses me out more than I'm willing to admit, as I know stress is a big trigger for me.

 

so, in summary, I'm willing to explore the idea of mold, chemical cleaners, and stress reduction via acupuncture. I sure wish there was a pill I could take to reduce stress. funny thing is that I don't generally feel stressed, but my wife thinks that it could just be there, even if I don't think I'm stressed.

 

Rick

[mommyfor4]

Rick, we just give the recommended two a day, morning and dinner and it has been sufficient. I still supp the Nat. Calm at night 1 tsp. I have found that with our son we can actually see when we have pushed the time between the pills. We have found that morning 7-8 a.m and then 4-5 p.m is "optimal" for him. You may need to go by how you feel and the results. Our son said he could "feel" when he was close to needing his afternoon chewable.

I really hope that you get some benefits!

 

Megan

[guy123]

I have been on 0.025mg of Clonidine nightly for about two years and it has greatly reduced my tic.

 

Please note this is a very small dosage; it is 1/4 of a 0.1mg pill.

 

I started on 0.05mg (1/2 of a 0.1mg pill) but I was having some strong side-effects.

 

I weigh around 160 for reference.

 

Seriously, 1/2 a pill put me to sleep. I have no idea how people can take multiple Clonidine pills per day, although maybe if your blood pressure is high to begin with it might not have such strong side effects (since Clonidine is a high blood pressure medicine).

 

I know this is entirely anecdotal, but I swear that when I eat pomegranates (or rather, their seeds), it also helps reduce my tic. Unfortunately, pomegranates are sometimes expensive and not always in season or available.

 

It is hard to find information about medication to control tics, but I spent a great deal of time reading studies and journals and other sources and have compiled everything I found here into one page for reference. Sorry the website design is kind of ugly. I know I need to clean it up a bit:

 

Tourettes treatments

 

That link will take you to the page. Everything is arranged by drug type. Hopefully it will help you if you're looking for more information (and so you don't just blindly take Haldol if the doctor suggests it as a first line of treatment).

 

I've been doing the alternative route since Oct 2nd. I know the day, because it was the day I had such severe tics that I decided I'd do whatever it takes to solve it. Prior to the alternatives, I was on tenex, clonondine, then finally went to tetrabenazine which is an orphan drug approved by the FDA only for Huntington's disease, but known to help with TS and NOT lead to the possibility of tardive diskinesia (probably misspelled). Note, that I had dropped all meds around June of 2010 as I somehow went from what was mild OCD to somewhat rough OCD and I finally had to start taking OCD meds as well - and for some reason the combo of tetrabenazine with the OCD meds (standard SSRI's) was next to impossible to handle. Taking one or the other -- no problem -- combining them -- horrible!!

 

today I am at my absolute wits end - I told my wife today that I'm done with the diet - it does not work for me. I don't understand why, but I just can't get it to work. I was pretty upset, and told my wife that everyone on here that is having success with the diet are children who don't have it as severe as I do - so for them it works, for me it does next to nothing. I'm also on the bontech supplements - again, expensive, but worth it if I actually saw results.

 

I'm 43 years old, and still do not understand why I was unable to shake this TS as it appears most children do when they become adults. It's so baffling to me, and extremely frustrating. I tried finding a support group in my town, but finding one that has any adult member with TS seems to be near impossible - probably because it's just so rare for adults vs. children....

 

Anyway, long story, but I'm this close to going back to my regular meds. I'm trying to be strong and not do it, but to be honest, I am just not seeing results from the diet and it makes it hard to stick to a diet that is difficult to begin with (especially when on vacation where it's so hard to even find a place to eat) if it appears to do nothing for you.

 

If nothing else about the diet, I have weened myself off of caffeine, diet soda, high-fructose corn syrup, alcohol, and foods with artificial colors/flavors - things I shouldn't have been consuming anyway.

 

I have asked for a list of recommended doctors (hopefully for adults) from my local TS support group, and do intend to talk to one of those doctors.

 

Rick

 

Other things to consider:

 

I feel like when I eat pomegranate, there is a slight reduction in tic severity. I was not expecting this at all when I first ate pomegranate, so I don't think there was any placebo there.

 

Some studies(?) report that quinine may reduce tics. I don't know the dosages, but you can get it in tonic water. IMO, tonic water is disgusting, but I would drink a bottle of it a day if it helped tics.

 

You may want to try those two things.

[Rick43]

I've been eating dried pomegranate seeds for a couple weeks now with no change in tics. Did the quinine in the tonic water work for you??? I'm happy to try it, but wondering if anyone saw any positive results.

[guy123]

I've been eating dried pomegranate seeds for a couple weeks now with no change in tics. Did the quinine in the tonic water work for you??? I'm happy to try it, but wondering if anyone saw any positive results.

 

I don't know about dried pomegranate seeds. I buy pomegranates in the store and prepare them myself. But they're only available in the winter. I also drink POM brand pomegranate juice (it is pretty expensive, tho).

 

I never tried the tonic water. I've been meaning to, actually.

 

Did you have any luck with Clonidine?

 

Some people report success with B vitamins and Magnesium. Manganese is reported to make tics worse for some people.

[nola]

Just wondering...which meds are better for vocal tics? My son has minor physical tics. He mostly has intense throat clearings, grunting, and lip popping sounds.

 

Still going taking the natural route. Just purchased Sheila Roger's book and hope to get more insights.

 

Thanks everyone.

[Chemar]

Nola, as far as I know, there are no specific meds that treat vocal vs motor tics.

 

Most of the meds given for TS tics are neuroleptics or antipsychotics and come with a host of potential ick side effects

 

I do know that a lot of posters here have mentioned how removing all dairy helped with vocal tics...this is not necessarily helpful for all, but worth a try

 

L-carnitine is an amino acid that may be helpful for vocal tics, but is is a strong supplement and not everyone responds well to it

 

I'm glad you have Sheila's book as it really is a very helpful resource to have.

[nola]

Thanks again, Chemar. I feel like I've been on the site constantly during the last few days. I always seem to make my way back here when it gets bad.

 

We did try L-carnitine a while back but our homeopath urged us to stop using it. Something about it being a diet supplement for wrestlers?? Not sure if it impacted my 45 pound 8 year old. Maybe I should try it again. How much would you recommend?

 

I searched "tourettes meds and side effects" last night while ds sat in his epsom salt bath. It freaked me out!

[laurena82]

Just wondering...which meds are better for vocal tics? My son has minor physical tics. He mostly has intense throat clearings, grunting, and lip popping sounds.

 

Still going taking the natural route. Just purchased Sheila Roger's book and hope to get more insights.

 

Thanks everyone.

Hi Nola--

 

FWIW, I remember the neurologist telling me that motor tics were much easier to clear with meds than vocal tics were.....

 

My son was only ever on the lowest dose pill of clonidine, but it did reduce the vocal tics as well as motor tics. The environmental and diet/nutritional supplements we did only seemed to have an effect on motor tics.

 

The reason I finally went ahead with the clonidine, is that it doesnt have the extra pyramidal side effects that many other psychotropics can have, along with the fact that all of the environmental medicine things we did still didnt touch his vocal tics, and his speech was severely impacted by the vocal tics.

 

He did "outgrow" the need for meds by early high school, and is mid 20's now and without tics. I hope things work out for your son as well.

[laurena82]

I have been on 0.025mg of Clonidine nightly for about two years and it has greatly reduced my tic.

 

Please note this is a very small dosage; it is 1/4 of a 0.1mg pill.

 

I started on 0.05mg (1/2 of a 0.1mg pill) but I was having some strong side-effects.

 

I weigh around 160 for reference.

 

Seriously, 1/2 a pill put me to sleep. I have no idea how people can take multiple Clonidine pills per day, although maybe if your blood pressure is high to begin with it might not have such strong side effects (since Clonidine is a high blood pressure medicine).

 

I know this is entirely anecdotal, but I swear that when I eat pomegranates (or rather, their seeds), it also helps reduce my tic. Unfortunately, pomegranates are sometimes expensive and not always in season or available.

 

It is hard to find information about medication to control tics, but I spent a great deal of time reading studies and journals and other sources and have compiled everything I found here into one page for reference. Sorry the website design is kind of ugly. I know I need to clean it up a bit:

 

Tourettes treatments

 

That link will take you to the page. Everything is arranged by drug type. Hopefully it will help you if you're looking for more information (and so you don't just blindly take Haldol if the doctor suggests it as a first line of treatment).

 

I've been doing the alternative route since Oct 2nd. I know the day, because it was the day I had such severe tics that I decided I'd do whatever it takes to solve it. Prior to the alternatives, I was on tenex, clonondine, then finally went to tetrabenazine which is an orphan drug approved by the FDA only for Huntington's disease, but known to help with TS and NOT lead to the possibility of tardive diskinesia (probably misspelled). Note, that I had dropped all meds around June of 2010 as I somehow went from what was mild OCD to somewhat rough OCD and I finally had to start taking OCD meds as well - and for some reason the combo of tetrabenazine with the OCD meds (standard SSRI's) was next to impossible to handle. Taking one or the other -- no problem -- combining them -- horrible!!

 

today I am at my absolute wits end - I told my wife today that I'm done with the diet - it does not work for me. I don't understand why, but I just can't get it to work. I was pretty upset, and told my wife that everyone on here that is having success with the diet are children who don't have it as severe as I do - so for them it works, for me it does next to nothing. I'm also on the bontech supplements - again, expensive, but worth it if I actually saw results.

 

I'm 43 years old, and still do not understand why I was unable to shake this TS as it appears most children do when they become adults. It's so baffling to me, and extremely frustrating. I tried finding a support group in my town, but finding one that has any adult member with TS seems to be near impossible - probably because it's just so rare for adults vs. children....

 

Anyway, long story, but I'm this close to going back to my regular meds. I'm trying to be strong and not do it, but to be honest, I am just not seeing results from the diet and it makes it hard to stick to a diet that is difficult to begin with (especially when on vacation where it's so hard to even find a place to eat) if it appears to do nothing for you.

 

If nothing else about the diet, I have weened myself off of caffeine, diet soda, high-fructose corn syrup, alcohol, and foods with artificial colors/flavors - things I shouldn't have been consuming anyway.

 

I have asked for a list of recommended doctors (hopefully for adults) from my local TS support group, and do intend to talk to one of those doctors.

 

Rick

 

Other things to consider:

 

I feel like when I eat pomegranate, there is a slight reduction in tic severity. I was not expecting this at all when I first ate pomegranate, so I don't think there was any placebo there.

 

Some studies(?) report that quinine may reduce tics. I don't know the dosages, but you can get it in tonic water. IMO, tonic water is disgusting, but I would drink a bottle of it a day if it helped tics.

 

You may want to try those two things.

 

Hi Guy 123--

 

Just wondering if you ever tried going off of the 1/4 tablet of clonidine?

 

I'm just remembering my son was on one tablet (0.1 mg), then, by early teens, he was fluent plus tic free, and neurologist suggested weaning down, so we went to 1/2 tablet, and he stayed good....so I was going to go to less, and the neurologist said that he thought son would be fine with none---so, we tried it, ...and he was fine. (he probably weighed around 130 then?)

 

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