Rick43
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Posts posted by Rick43
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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
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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
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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).
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Hi Rick, I too am sorry to hear you are feeling so much frustration, so much work and no reward!!!! Just curious...have you tried anything other than the BonTech? I have seen that some have great results and others not so much or even increases. If I'm not mistaken they have soy in them, could soy be a trigger for you? Maybe trying just a good clean multi and continuing diet may be helpful as a last ditch attempt. I don't know if it's harder the longer you have had this but stands to reason that getting at our kids young allows more healing and quicker results?! Did you see any results at all from removing any foods? Seems to me the key is getting just the right balance between what the body shouldn't be having and what it isn't getting. So maybe trying a different way of getting vitamins and minerals may be helpful. I think that the multi that Chris uses also has adult version and I know the one my son is on does as well. Could there be an environmental factor that hasn't been found? We can't use anything but all natural cleaners, body washes etc for our son. Our town water was a factor because of the chlorine, no candles or scented products etc. I give you credit for staying with it this long without much result, and I really do hope that you can find SOMETHING to minimalize the tics. My husband's tics decreased into adulthood so they are very minimal but I know that even the one's he still has are frustrating for him and tiring in every sense of the word! Good luck and I hope you can find what you are looking for.
Megan
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
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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:
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
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Latest update...things are still going pretty well for ds. He has a throat clearing tic that is lingering and acts up every now and then. Have eliminated oranges, and tomatoes completely now after "challenging" them and getting increased tics. Bananas are my next challenge (sure hope not). Have added back kefir on a rotation and so far, so good...he is so happy to have granola and kefir again!!!! Definately have stopped fish oil and vitamin D, seen them increase his tics time and time again. He asked today if we could add his Natural Calm in the morning as well, will give it a try. He feels it would be beneficial. Are you kidding me? He's 9, and so on top of this! So impressed
That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement!My best to all,
Megan
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.
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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
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Rick, if you have time, please post and let us know how the lemon balm is working for you. I'm curious since Chemar's son has had such wonderful success.
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
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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
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well we were warned about developing tolerance as well as a reverse effect if exceeding 6 wks at high dose..... and my son is still on it (only needs 1 gm a day now) and doing great!
Rick, are you taking B6 or P-5-P with it? Inositol needs sufficient B6 to function correctly
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
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well we were warned about developing tolerance as well as a reverse effect if exceeding 6 wks at high dose..... and my son is still on it (only needs 1 gm a day now) and doing great!
Rick, are you taking B6 or P-5-P with it? Inositol needs sufficient B6 to function correctly
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.
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Hi Rick
I just noticed you have been on the high dose Inositol for 3 months!! and that in itself may be why it is not working properly IMHO
You may have had the initial benefit but then instead of going down to "maintenance dose" you stayed on waxing dose
Did you try titrating down and staying at a lower dose?
we were told not to exceed 1 gram for more than 6 weeks at a time.
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
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From what I have read all children tic more at home because they are comfortable with it. My son was the same way. As soon as children at school started saying something he started ticing at home nonstop.
We have a Golden Retriever and 2 cats. Have you tried any natural remodies like magnesium, fish oils or probiotics?
As soon as I introduced magnesium my son's vocal tics and head movements went away. will they ever come back? maybe, but for now I know it has nothing to do with the pets.
Have you had your son tested for pet allergies?
I would seriously consider the allergy testing before you did anything drastic about your pup. That would help to make the right decision.
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.
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Well.... the best thing about this so far is that it SEEMS like it's becoming a little predictable. Obviously it'll take a lot more experimentation to determine but last night was better than the night before and this morning is WAY better than yesterday morning. Now... as long as NOTHING changes I can still start chalking this up to salicylate.
I want to give it some time before we experiment any more...
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
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i've done some reading and they say inositol can give you stomach cramps/gas/diarrhea as side effects. i'm really just experiencing the pretty serious cramps after 2 weeks of use. is this normal/does it subside? it is almost so bad that i'm considering stopping taking inositol, though i must admit i do feel like the inositol is helping the OCD (even though i know they say it takes 6 weeks to really see if it helps).
Hello,
I have been taking inositol (12g/day) for I'd say about 3 months now. I wasn't as concerned with the "serotonin syndrome" that chemar talked about only because I do not take any SSRI's and after talking to my naturopath (who was at first reluctant to have me take so much), said she is okay with it only because she has heard these higher doses can help people with ocd.
AT first I thought it was working great. However, recently, I am starting to feel that it's not working any more. via the Tourette's site, chemar and others suggested other items as well, such as 5-HTP, samE, kava, etc. I added the 5-HTP about 2 weeks ago now to go with the inositol, but I don't think it's working. I was on 'serene' a few weeks before that, which is supposed to be similar to 5-HTP, but didn't see any help.
I am trying to figure out if I should simply up the inositol dose even further (ie, as high as 18g/day as I'd read before), or if I should just give up on it. I don't have any of the stomach cramp problems or irritability to report.
I admit, I don't want to overdo it on inositol, esp. if it doesn't work - but many seem to claim it is great. I just don't know why it worked for me for a few weeks, then stopped.
I know people swear by CBT, but I am baffled by it. My only ocd issue seems to be unwanted/intrusive thoughts that I can not seem to shake when they happen. It is extremely annoying, so but I don't feel like it's because of some irrational anxiety, just some obsessive part of my brain that I enter and can't pull out of.
I really want to try some other supplement recommendations first as I don't know if staying on OCD at this dose for a long time is a good idea anyway.
looking to add:
more 5-HTP
samE
kava or it may be keva
a few others (my list is at home so don't have it right now)
Rick
anyone here have something they have found to be particularly good as alternative or in addition to inositol?
BTW, my naturopath insists to me that diet also plays a role in OCD - and that the super restrictive diet I am on (mainly for my tourette's) will also benefit my OCD, but will take much longer to kick in. My super restrictive diet is basically no wheat/dairy/gluten, only organic foods, no caffeine, no alcohol (tried it last week and did not go well), no preservatives, no soy, no artificials, and no corn. I'm hoping to expand it soon, but have been advised to stay off wheat and soy for sure.
Rick
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Well, I don't know a lot about this beyond what we're doing here. Beef isn't really supposed to be an allergen. I know personally wine affects me almost as much as other things affect my son. With us, though, it's mostly throat clearing. I wish I had more for you. Maybe Cheri has more information for you. She's pretty smart!
My understanding is that throat clearing is a pretty common one - that was one of the first questions the neurologist asked me years ago when I went in to find a magic cure for this. i don't recall ever actually having a tic specifically about throat clearing (although my tic feels very similar that that to me), but I do recall many years ago that my brother constantly cleared his throat. He was probably around 15 if my memory serves me correct. it lasted a few years (I'd guess about 5-6 years), then seemed to disappear. I have not seen any other sign to suggest he has TS, as I do. He also went through a major hand-washing phase when he was around 11, which I know is classic ocd. that disappeared as well about 1-2 years later. I would love to understand why for him it just disappeared, but I'm sure I'll never know.
thanks again for your thoughts - i realize none of us have all the answers, but I just find this forum to be great. i am always talking to my naturopath about what people of this group discuss and find works or doesn't work for them.
Rick
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Hey Rick,
If your issue is a salicylate sensitivity then wine is high in salicylate.
http://salicylatesensitivity.com/about/food-guide/alcohol/
Beer, not so much. But my guess is that the length of time depends on how long your system has been without the trigger and how much you consumed. My son had less than he'd normally have for cranberry sauce. He's been better since this mornings episode. Tonight will be important to observe.
May I ask what your vocal tic is? Is it a throat clearing?
If it is, what does it FEEL like to you that causes you to tic?
Kevin,
I definitely believe the wine was a problem -- beyond salicylates, I've also heard red wine is high in tyramine. I only tried it because it had been about 5 months, and i wanted to see if it was a problem or not. Cleary it is. I just find it baffling that I'm still having hte issue 6 days later. I had two glasses of it. i would have thought 72 hours max before it was out of my system - which is why I was wondering if it was the organic ground beef.
and I just realized that I had the 2 gluten free beers on Tues evening - which is still over 72 hrs ago. And, on our way to the store today, I realized that I did in fact have one candy bar on Wed. evening (80% dark chocolate, no dairy, limited sugar) - it's not exactly a great piece of chocolate, but i was a bit desperate for something chocolate.
as far as the vocal tic, it's not really throat clearing, but actually is almost a barking or scream however, it is important to "feel right" in the throat if that makes any sense. I'm not sure how to describe how it feels beyond just saying that I absolutely feel I must do it and if I don't (ie, surpress it), it will get worse. It's very difficult to surpress. I can't wait for it to go away, as it kicked in the night I had that red wine (Sunday).
however, if I'm concentrating, such as now while typing this email, all tics just go away temporarily. which for me, has always been the case. will come back the moment I finish this though.
Rick
PS It doesn't sound like you believe the organic ground beef is an issue. I am really hoping it is not.
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Over the span of the last 24 hours or so he's progressively gotten worse. Lots of coughing right now. It's usually worse in the morning but nothing like this. He's going to gym now so hopefully that'll "shake" it out of him. After the apples/applesauce, it took a few days to completely go away. Hopefully it'll be gone by Monday this time and then we'll REALLY know what's to blame.
Hey, Kevin, (and everyone else),
Above, you mentioned something that stood out for me. You said after the apples/applesauce it took a few days to completely go away. The reason this stands out for me, is I can not figure out how long to assume a 'bad food choice' takes to get through my system. I have been doing great up until 6 days ago. I've had pretty strong vocal tics within hours after having some organic red wine (first alcohol in months). Family was in town, so I wanted to enjoy some drinks with them. the next night, I decided red wine is definitely a problem, so i tried gluten free beer (not so bad actually). that was monday night. it's now saturday, and I'm still having bad vocal tics. I can't imagine it could still be in my system --- wouldn't 72 hours be enough???
Then I started thinking it must be something else. (Note: I ate nothing outside my normal diet for thanksgiving -- pretty boring, but ate nothing abnormal)
the only thing I can think of is that I've been eating alot of organic ground beef the last week. I found nothing on here to suggest organic ground beef is an issue, but wanted to ask about that, just in case.
so it really comes down to the alcohol from 5 days ago or the organic beef I'v had every day. Does anyone know if it's normal for a 'bad food' to give you issues 5 days later??? Seems like a long time, but if so, all i think I'm left with is the organic ground beef. I'm baffled right now.
either way, I'm back off the alcoholic drinks....
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Rick, just confirming that corn was identified by an allergist as a food simply to rotate for my son, but I pretty much eliminated it later anyway as a result of some (perhaps imagined) rises in tic activity. It wasn't a real obvious connection that led me to do it, but I became suspicious a couple of times, and when that happens, I just eliminate, regardelss of what information I have from the allergists. It happened with tomatoes (tomatoe sauce being the main culprit), too. Fortunately, he's able to eat enough other things that the corn hasn't been an issue. The lack of tomatoe sauce for his pasta has been a tougher one to deal with, but perhaps an advantageous move in that he has cut down on his pasta (wheat) consumption as a consequence.
Kevin, I'm sure you and Thea are well aware of this but I figured I'd throw it out there. If your son's eating a ton of corn foods recently as a result of eliminating so many other things, it could be that, because of the increase of it in his diet, it has started to become an issue whereas it wasn't before.
Chris
Chris - to your point. I would love to re-introduce corn one day- as it is everywhere. It appears I have an issue with tomatoes (I've introducted them twice and seem to see tics go up), and that is definitely a bummer - as tomatoes are EVERYWHERE.
honestly, the no wheat and no soy is also very tough - I want to introduce one of those, only because it opens so many options. I am trying to decide if wheat, corn, or soy is best to try first. My naturopath seems to believe wheat is not a good choice as apparently gluten does something with neurotransmitters (if I remember what she said correctly)
Kevin - I am going to suggest that meat stuffing to my mother-in-law - I like that idea.
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Hey Kevin,
I was just thinking about part of your son's diet. (and apologize in advance if this was already stated, but I didn't see it). I am still on a very restrictive diet, and I do remember a number of people here stating that corn was a trigger for their children. I personally would love to add corn back in to my diet (corn muffins, etc), but I have been very hesitant to do so after hearing people say it was a trigger.
My naturopath was saying maybe I should try corn (not sweeteners), but I've been hesitant given what people have said.
I also asked my naturopath about adding back in soy and/or wheat, and she didn't think that was a good idea yet - so this is likely why I was hoping to add corn back in. Corn bread stuffing next week sure could be nice
Anyway, just wanted to toss corn out there as a possible trigger item.
Rick
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One acronym I've seen used several times on this forum is "ds" or "ds9", etc. I haven't quite figured out what that means yet. I THINK the "s" means "son" and the number stands for the childs age. But I'm not sure what the "d" stands for.
could someone enlighten me here?
just some light reading on the latitudes forum for me tonight as I continue to understand TS/OCD more on my personal journey get this under control...
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Kevin,
I just found this blog of yours and read the entire thing. That's really great to see the improvements you have seen with your son. Although your last post seems to suggest that you may be seeing a shift in tics from coughing, etc to sniffing.
I only just found this forum a few weeks ago, and unlike many people on this forum, it's not my child that has TS/OCD, but me. (43 year old male). I do have very young kids, so I obviously know what to look for as they get older given the fact taht I have it (and have had it basically since I was about 8 or 9).
I've only been on the restrictive diet since Oct. 2nd, however I personally am not sure if its working -- but I try to remain optimistic that it will work given what everone else has said. I am also on Bontech and have been taking that since July.
I need to re-read your full list of diet restrictions, but I believe I am pretty darn close to that. However, I have been using evaporated cane juice sweetener for gluten free oatmeal, and your blog is making me wonder if I need to cut that out. And I agree, organic brown rice milk is not my favorite, but it's getting better.
I am seeing my naturopath tomorrow, as I called her today saying I needed some more ideas, as I don't get why my bontech/restrictive diet doesn't seem to be working. Cheri mentioned tomatoes as a possible issue, so I cut those out 3 days ago as well. I also heard bananas could be bad, so haven't eaten banana's - however, I see banana's aren't an issue for you, which is sure nice.
I need to reread your blog again to see if I need to eliminate other foods. I have not yet made the switch to organic meats and do wonder if that may be an issue. only reason I haven't moved to it yet was the chicken I buy is stated as "minimally processed, no additives/preservatives" so it seemed safe.
Ohhh, and should mention that I pick up my natural Calm tomorrow that Cheri (Chemar) recommended - however, I did read from Lynn777 who is also on bontech that she say minimal benefit from Natural Calm - so, we'll see.
And yes, free will can be tough... the diet I am on (no wheat/gluten, dairy, soy, coffee, alcohol, artificial flavor/color, preservative, artificial sweetener) can be limiting. I will remove evaporated cane juice sweetener if people insist that makes a difference, but man it's sure nice to have just a bit of that on my oatmeal.
Rick
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Hi everyone.
I'm really starting to see some improvements for my tics (vocal/motor ) with the bontec, elimination diet, and other suggested supplements such as taurine, Epsom salt baths, etc. No perfect, but I believe improvements are coming.
However, I'm still seeing issues with my OCD, and have been sticking very close to my 10g a day of inositol... I take it 2x a day and not with meals -- also at separate times from other supps.
Does anyone have any thoughts or suggestions to improve the OCD? The inositol does seem to be good, but some days it seems pretty ineffective.
I suspect their may be additional supplements someone may know of that work.
Thanks, rick
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Hi Rick! This may jump all over but here goes...you can do a total elimination diet (this is what you are attempting) and add back over time but this is pretty huge! I agree with Cheri that what most of us use is eliminating a food group or groups and then challenging them if even necessary. For us, some were so obvious we didn't need to challenge them. Once we took our son off wheat, I remember him having a monstrous waxing before it got better. The same with dairy. It came about a week into the removal and lasted about a week.
Our ds loves blueberries and they dont seem to be a trigger, but I highly suspect tomatoes and am about to try eliminating "night shades" for a bit. ..
The only questions I had about your triggers right now were the tomato, possible soy (definately not good with our ds) and some gluten intolerant individuals cannot have even oatmeal...Our ds has it but not on a daily basis and must be a high quality oatmeal.
Maybe your stress is over the diet and trying to track everything all at once. I found when we started I was on a mission to find out any and all triggers as quickly as possible...I found out it doesn't work that way...sigh
At least for us it is an ongoing thing and focusing on main food sources first....wheat, dairy etc made it easier. We are 3 years in and have his main triggers, but there are still times we need to eliminate and challenge a food. It may take some pressure off to go after the BIG ones first and then make a list of other food groups to try over time.Three kids can be stressful,(we have 9,7,almost 5 and just turned 3) let them be your exercise and stress relief...and if all else fails: get out ALONE with your wife, sounds like she is very supportive and involved, that's a real blessing!
Best wishes, Megan
Thank you Megan (and Cheri)
Starting late last night the tics did start to show some signs of relief - they are also doing better so far today. Still clearly there, but seems like they may be improving.. Let's hope the trend continues.
I did get an appointment with a naturopath in my area, and saw her yesterday. Thankfully, she seems to be familiar with TS, as she is currently seeing a 12 yr old girl with TS, so she is at least familiar with this. I called about 4-5 different Naturopaths before I found one that even had dealt wiht TS.
She put me on a elimination diet similar to what everyone else here is saying. She also told me that her belief is that the 'toxin dumping' is playing a role in my strong tics as the body is adjusting to this elimination diet and removal of toxins.
She looked through my bontech meds and saw no issue with continuing them - she added Taurine and Udo's 3/6/9 to the daily list for me to take.
And yes, she had me move to gluten free oatmeal vs. the standard oatmeal I was eating. I asked about sea salt, as my wife read that it may contain MSG, and her opinion was that sea salt is perfectly fine. I was a bit surprised, as I thought people here had issue with sea salt, but maybe not.
She also asked me about any strep, etc as a child, and I have no memory of ever having this...
I'm heading in right now for my first acupuncture appointment. I've never done it, but heard such great things about it, that I need to try it out.
Rick
That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement!
At least for us it is an ongoing thing and focusing on main food sources first....wheat, dairy etc made it easier. We are 3 years in and have his main triggers, but there are still times we need to eliminate and challenge a food. It may take some pressure off to go after the BIG ones first and then make a list of other food groups to try over time.
Wondering if we should try medication
in Tourette Syndrome and Tics
Posted
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.