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.

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

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

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).

Megan & Chris, Thanks for the great tips. I did decide to NOT go down the path of standard drugs just yet. I know that tetrabenazine works, so it's tempting, but I recall that in the long term it seems to make OCD flare up (or at least that's my theory) - so I am trying to avoid that. I also know that tenex just knocks me out, as my blood pressure is on the low side to begin with. However, I MAY consider adding tenex or clonidine at a low dose just to see what happens - however I seem to recall that it knocks me on my butt. (been 10 years, so hard for me to remember right now) What I decided to do for now is try to find some other options over bontech. I know others use multi-vitamins, etc that seem to work for them, I just need to contact them and get their lists. (I think Kevin in MA) who has the blogging our journey thread going has a pretty comprehensive list I did check the bontech and saw no signs of Soy - but did see soy in some cal/mag/zinc multi's that I was taking - so stopped that immediately I also look at my soap I use (Irish spring) and saw coconut oil along with other things I don't recognize, so asked my wife to pick up some natural soap today. I'm already using natural shampoo. Do either of you (or anyone reading this) know of a good clean multi that would be a good replacement for the bontech program? I'm happy to ditch bontech if it just doesn't work for me. I know the bontech, beyond just being a multi, includes the grapeseed extract as a separate pill as well as fish oil (which I stopped taking just to see what happens) Thanks again Rick

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

Megan --- Am I reading this correctly? You eliminated fish oil and vitamin D??? I am on Bonnie Grimaldi's program (have been for months) - and the fish oil and vitamin D vitamins are a big part of her diet. On top of that, my naturopath has me taking 5000 UI of D3. I read this email and just had to make sure I'm understanding you correctly. Granted - I wish my bonnie plan and diet were giving me better results - has not been very good for the last couple months or so.

Hi everyone, As some of you know, I am 43 and have had tics all my life. I will admit very freely that I have gone through periods of having no issue at all with it to being very close to depression. I have accepted that for me I will always have it, and try my best to not complain anymore. One thing I've struggled with (and still do) is admitting to people that I have it. I've done much better in the past year, as most friends and family all have heard about it directly from me. I have yet to tell one person at work however, even tho everyone tells me I need to. May sound silly, but I don't want to be discriminated against for things like promotions, etc. I almost started telling people , but didn't because I still have faith that my diet and bontech will minimize it to the point where it's not obvious. Anyway, not a perfect approach, but if nothing else, I'm staying as positive as I can that I will finally find a solution. And yes, I have 3 kids (5, 3, 1) and would happily take this 10x what I have now if it meant none of them have to deal with it. But, if they do, at least I know exactly what they are dealing with and hopefully I'll know exactly how to adjust the diet to help from the get go. Rick

things seem to be showing some improvement. However, I'm not sure if it's because of the jasmine oil, the lemom balm tea (pills), or the fact taht I upped my inositol to 18g/day. My plan is to try to slowly come off the inositol (get down to 1g/day) - however, I am going to wait until after the holidays, as I do believe there is an improvement, and don't want any major issues to deal with over the holidays. Note: I believe Chemar stated somewhere before that the lemon balm tea and jasmine oil will take a few weeks to kick in, so if that's the case, it may be the inositol dosage bump that is helping. Rick

Kevin, I'm really starting to suspect salicylates for myself now too. I keep forgetting to check that huge list before eating and today I had a bunch of organic mustard (no MSG). I started having a vocal tic again that is finally dying down... thank goodness. I have got to commit that list of "high" and "very high" foods to memory. I also stopped the blue-berries and I THINK it's making a difference. I'm writing because I'm actually finding it very surprising that this appears to playing out this way. I would have thought it was about dairy, wheat, soy, corn, artificials, etc. (Note: I have not yet had any dairy, wheat, or soy since I started Oct 2nd, so those could also be an issue - I have been very hesitant to add them back in.) Time will tell, I suppose... One other question for everyone that reads this thread: Do any of your kids seem to experience OCD symptoms on occasion? the OCD forum is generally much quieter (chemar is there, thank goodness ) and I definitely feel I have both and that they almost alternate. Ie, TS one or more days, OCD the next few days.... I ask this because all web sites I read suggest that it is very, very common for people with TS to also have some form of OCD. Take care Rick

I'm with you on the inositol. I don't know if I really want to go to 18g/day, but I am trying it for now only while I look for alternatives so I can get off the stuff. I think I'm already seeing the reverse effect if whaty you mean by that is that it essentially stops working. I am taking plenty of B6 vitamins (via bontech), but not familiar with the P-5-P. I believe the bontech has 2500% of daily recommendation of B6 per the label. I did some digging on iherb today, and they carry two types of NOW jasmine oil. They are out of stock of the more expensive one, and still have the cheaper one. I suspect the more expensive one is the one you recommend as it is called "jasmine absolute oil" and the cheaper one is called "jasmine scented oil". do you think the jasmine scented oil would be okay? I'm also getting the lemom balm tea you recommend - couldn't find it at my local grocer last night. My wife was able to find pure jasmine oil today at whole foods. I'm trying it out now. nice smell it wasn't NOW brand, but at least it's jasmine oil. She also found lemon balm - however, its not tea, but actually pills. The person at whole foods told her it's actually better. I don't know about that, but I was fine with the pills as I'm not much of a tea person anyway, and as long as it's the same as the tea, I'm fine with it. Rick

I'm with you on the inositol. I don't know if I really want to go to 18g/day, but I am trying it for now only while I look for alternatives so I can get off the stuff. I think I'm already seeing the reverse effect if whaty you mean by that is that it essentially stops working. I am taking plenty of B6 vitamins (via bontech), but not familiar with the P-5-P. I believe the bontech has 2500% of daily recommendation of B6 per the label. I did some digging on iherb today, and they carry two types of NOW jasmine oil. They are out of stock of the more expensive one, and still have the cheaper one. I suspect the more expensive one is the one you recommend as it is called "jasmine absolute oil" and the cheaper one is called "jasmine scented oil". do you think the jasmine scented oil would be okay? I'm also getting the lemom balm tea you recommend - couldn't find it at my local grocer last night.

Cheri, I did some looking on the web on that exact topic - as I was wondering if I need to come off inositol. To my surprise, I found that many, many people are on as much as 18g/day and have been for a long time. In some cases it was multiple years. There was even a report from a psychiatrist who said he found several patients on 18g/day for multiple years that were still getting great relief from inositol. I did see one person comment that it worked great for about 2-3 months (18g/day), but then stopped being effective. It's tough when your in the middle of it, and want to find some relief, and you see multiple stories that suggest go to 18g/day and it will work - and you can stay on it indefinitely. I basically did a google search for 'inositol OCD dosage' Rick

I know for me personally, who has TS, it is always much worse at home than work -- for exacly the same reason people describe above. And yes, I too would love to wake up one day and have this and OCD just disappear. That would probably be my one wish for the genie bottle. note: I can't stop it 100% at work by any means, I just force myself as best I can to keep it more under control. not easy, and probably builds up tension I don't need.

Hey Kevin, I was just wondering... after reading through that HUGE list of foods high in salicylates that you sent the link out for, have you found ANY foods that are listed as high or very high in salicylates that are NOT a problem for your son? That may sound like an odd question, but after talking with many of you I am becoming quite convinced that the red wine and tomato issue I am seeing is because of the salicylates as well, however, I have been eating a ton of blueberries (smoothies) as I didn't know they were high in salicylates until now -- and I don't THINK they were an issue for me... In going back through your blog the high salicylate food you have been typically calling out was apples, which is what made me wonder if there was another food high in salicylates that doesn't appear to be as much of an issue as the apples were for your son. Maybe it's a stretch, but made me wonder..... (The other thing that surprised me about that salicylates web page are the list of symptoms people can have - that list was enormous) Rick