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I have a thread going related to my daughter's OCD: 

 

Inositol has been recommended as a supplement to consider.

If you have experience using this, can you please chime in?

Any particular pros or cons I should know about? Have any of you used it with your children?  

Should it be used under medical supervision or is it okay to try as an OTC supplement?

All input is appreciated.

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As mentioned in the other thread, I tried it and it didn't seem to help my OCD much, if at all.

I don't recall any ill effects.

As I remember, very large doses are recommended.

It's fine to try as an OTC supplement. No medical supervision needed. 

It's not something I would hesitate to try for any reason. I know some have found that it helps them tremendously. It just wasn't a miracle cure for me.

Best wishes! 

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It causes low blood sugar?? It's also saying online that it's a form of carbohydrate and will feed candida when you go taking the crazy high doses they're saying online to take.

Personally, just seems to me it would be better to start with genetics and find things you have evidence are low and work on them first. Like it's fine to take inositol as a patch, but is it low because of some actual problem in the cycle, are are they taking it just to ramp up an effect?

So like if you run genetics, you can look at the TPH2 gene that affects conversion of tryptophan and then take 5HTP if that is glitched. That will up the serotonin levels, boom. There's all kinds of research being done on genetics now and OCD and just about every disorder. So I'm looking at this inositol and going ok WHY do they need it? Is something glitched or are they just ramping it up pragmatically? I think with genetics testing you can find things you know are low that are factoring in. 

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So I'm just playing with this. When I google "genes involved in ocd" plenty pops up.

https://www.newscientist.com/article/2150565-four-brain-genes-help-explain-obsessive-compulsive-disorder/  This mentions the HTR2A gene, and I can verify that you can find results for SNPs of that with 23andme testing.

https://ghr.nlm.nih.gov/condition/obsessive-compulsive-disorder#genes  mentions SLC6A4 as well and that will be in 23andme raw data.

https://www.sciencealert.com/we-might-have-just-discovered-the-genetic-roots-of-ocd  adds NRXN1, CTTNBP2, and REEP3. Of those the NRXN1 and REEP3 will be in 23andme testing.

So if they're using SSRIs and you see a TPH2 defect, you could think about the 5HTP. If VDR, look at vitamin D, which also stabilizes mood. What if something got you 80% of the way there working on these root issues, and then you could take a smaller dose of inositol to polish? 

I don't know, I don't think we're all the way to OCD in our house. I'm just always looking for things to help ds because he's pretty challenging with his autism and clearly has these physical roots that take the symptoms beyond what he's prepared to regulate cognitively. If you run genetics with 23andme, you can download the raw data, run it through promothease on the cheap, and then search for any SNP or gene to see what pops up. You can actually scan the raw data yourself too. Anyways, not hard, lots of info for under $100. We've gotten about 80% of ds' anxiety under control this way. It's not pipe dreams when I can see the genetics, can read studies of how they've treated that, and then try it with safe, discrete doses. But once you start ramping stuff up, no matter how natural, then you've got the question of side effects and consequences. That's why I was asking why they can't get the effect with lower doses of inositol, what else is going on, where else you could jump in the process.

Edited by PeterPan
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2 hours ago, PeterPan said:

Personally, just seems to me it would be better to start with genetics and find things you have evidence are low and work on them first. Like it's fine to take inositol as a patch, but is it low because of some actual problem in the cycle, are are they taking it just to ramp up an effect?

 

Obviously research labs can test for inositol in nerves etc.. but I don’t know of any ordinary way as a regular patient/ person that one could test levels of it in nerves or brain.   

I believe iirc that plasma levels are not reliable indication of inositol levels where it’s needed.

And even if they were, I have no way to get an Inositol level in blood plasma tested.  

 

In some ways everything relates to genetics.  Even a tendency to break a bone or get food poisoning probably has a genetic aspect.

But I also think people can get too hung up on genetics, sometimes. 

Inositol could be low due to not getting enough of it compared to need for it from food consumed, or because the gut isn’t working right to produce it from food.   Which can be related to brain - gut cycle...

And I’m not sure genetics testing would show either food sources nor gut production. 

 

 

1 hour ago, PeterPan said:

What if something got you 80% of the way there working on these root issues, and then you could take a smaller dose of inositol to polish? 

 

 

Speaking very personally, I think for myself: definitely yes.

 

 I don’t take a carefully measured amount of inositol each day, but rather an amount that feels right and it does change day to day.  And for me is much lower in summer, when both fresh fruit natural sources are more abundant and sun supply of vitamin D.  

I sometimes feel like I don’t need any inositol,  but if I don’t take any for a few days in a row, I will feel it.  That happens for me with other supplements too, including vitamin D where I can forget to take it with relative impunity a day or too, but then find I’m dragging or bed ridden...

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2 hours ago, PeterPan said:

I don't know, I don't think we're all the way to OCD in our house. I'm just always looking for things to help ds because he's pretty challenging with his autism and clearly has these phys

 

We aren’t dealing with OCD per se, but anxiety, adhd, physical nerve damage, and some of the other things inositol can possibly help with 

I wish @OKBud might see this and give some thoughts and experience...  I think someone else on here , @sbgrace ?    (maybe @Lanny others ?)  ? Also had mentioned trying inositol. Personally or for dc or both? 

Edited by Pen
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2 hours ago, Pen said:

 

We aren’t dealing with OCD per se, but anxiety, adhd, physical nerve damage, and some of the other things inositol can possibly help with 

I wish @OKBud might see this and give some thoughts and experience...  I think someone else on here , @sbgrace ?    (maybe @Lanny others ?)  ? Also had mentioned trying inositol. Personally or for dc or both? 

 

I saw that I was mentioned here in my notifications.  I have never heard of that medication.  I have P.T.S.D. which I suspect is something very different than what is being discussed in this thread. 

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42 minutes ago, Lanny said:

 

I saw that I was mentioned here in my notifications.  I have never heard of that medication.  I have P.T.S.D. which I suspect is something very different than what is being discussed in this thread. 

 

It’s used by some people for PTSD too.  (Like OkBud just posted about.)  In our own family reasons are more close to PTSD than OCD.  It’s not really a “medication”—rather a “nutraceutical “ might be more a correct term.  In South America you may perhaps have it high in diet.  Not sure what you eat, but it’s particularly plentiful in many citrus fruits and in melons, especially if fresh and naturally ripe.    I think I heard that a slice of melon for breakfast can give over a gram, for example.   

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50 minutes ago, OKBud said:

It's a b vitamin and stress eats b vitamins for breakfast, lunch, and dinner.

I don't have ocd but I take large doses of inositol for PTSD symptoms. It literally changed my life.

It's delicious, so it's an extremely pleasant supplement to take. 

When I first started taking it, it gave me dry mouth. That wore away. 

I've been taking it for about... Hmm... Three years or so now. At one point a few months ago, I ran out and didn't get more. It was a very bad time. 

The stress in my body is a cascade of system failures, so to speak. The inositol, as far as I can tell, is what helps me avoid that cascade on a physical level. If that sounds familiar, inositol is definitely worth a try.

It's not something you notice a feeling with (once the dry mouth is gone) ... But it's sure as heck something you feel the lack of if your body needs it and you aren't getting it. 

I can now go for a week or so with a low dose of inositol in my b-vitamin multivitamin (like if I'm travelling and don't take my unweildy and cocaine-looking powdered inositol lol), but after that I need the big dose again. 

Hmm... It took a few weeks before I realized oh, I haven't had any flashbacks in a while and oh, my panic attacks are getting more mild and more manageable and farther and farther between episodes. 

That's all I can think of off the top.of my head. 

I did try it for one of my kids. It was no harm done, but it didn't help his anxiety. A large dose of Omega 3 helped that kid, though! 

 

Thanks for responding.

It was considered a B Vitamin when I first took it too.  Apparently it lost its “vitamin” status when discovered that it is made by the gut. Sort of like Pluto losing planet status;). 

I find increased stress increases the amount I need...   probably both using it up and messing with gut production

fish oil also helps me and Ds — glad you added that

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2 hours ago, OKBud said:

Ah, I take 1.5 tablespoons a day. More if that seems like a good idea and less of I forget the half T at night 🙂

Thank you so much for responding and sharing your experiences.

Have you had any negative side effects other than the dry mouth? 

The hypoglycaemia mentioned upthread is a tad concerning. My daughter easily gets hypoglycaemic (no diabetes - that's been tested).

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43 minutes ago, chocolate-chip chooky said:

The hypoglycaemia mentioned upthread is a tad concerning. My daughter easily gets hypoglycaemic (no diabetes - that's been tested).

 

To the best of my research that’s only a temporary reactive hypoglycemia if coming off a large dose suddenly .

Afaik it helps normalize blood sugar more than to cause it to go too low.  

 I suggest you look it up for yourself.  If you find evidence that it causes direct problems rather than temporary in reaction to suddenly stopping it, please share, I’d appreciate knowing that.  

 

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Those of you who have used it, are there any differences between brands? And are there different strengths or types that I should be aware of?

I'm hunting around online for an affordable one to try.

I can get Healthy Origins 454g (16 oz) for $31AU.  If I start with just 1-2g per day and build up gradually, that should give us enough to give it a decent try.

I was just reading about it on wikipedia and it tells me that inositol is used as stunt-cocaine in movies. The things I learn.

Thanks heaps.

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Ah.  I was thinking “chook “ might mean you are in AU.  Don’t know what to recommend there.  I expect brands are different .  Basically I think pure and fresh is what one wants.  Some comments on some brands seemed to indicate they might be stale, or have contamination perhaps?  

 I have so far been using NOW brand by the 16 oz bottle,  which has seemed good quality to me, but have also considered switching to something else that would be less expensive for a kilo bag.  I use it enough to justify getting a kilogram package at a time.  I expect perhaps packaging is part of cost.  

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43 minutes ago, chocolate-chip chooky said:

Those of you who have used it, are there any differences between brands? And are there different strengths or types that I should be aware of?

I'm hunting around online for an affordable one to try.

I can get Healthy Origins 454g (16 oz) for $31AU.  If I start with just 1-2g per day and build up gradually, that should give us enough to give it a decent try.

I was just reading about it on wikipedia and it tells me that inositol is used as stunt-cocaine in movies. The things I learn.

Thanks heaps.

 

Just looked it up—reviews look fine and better price than what I’ve been getting!

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Well, I've ordered some.  Let's see how well it tackles this OCD. I just want the dial turned down a bit, so that my daughter's baseline OCD 'volume' is set lower. I'm not expecting miracles, although I'll accept them if they happen 🙂 

Thanks everyone for your input and advice. It's much appreciated.

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On 3/25/2019 at 11:54 AM, Pen said:

 

We aren’t dealing with OCD per se, but anxiety, adhd, physical nerve damage, and some of the other things inositol can possibly help with 

I wish @OKBud might see this and give some thoughts and experience...  I think someone else on here , @sbgrace ?    (maybe @Lanny others ?)  ? Also had mentioned trying inositol. Personally or for dc or both? 

 

My son has OCD, and we did trial inositol.

Unfortunately, it aggravated his ADHD.  In fact, I actually saw a study where they found that inositol worsened ADHD symptoms.

I do believe inositol can be helpful for OCD. It just was a no go for my son for other reasons. 

FWIW, NAC, N-acetyl cysteine, also has research for OCD and OCD spectrum disorders. My son does take NAC.

 

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My son takes inositol for OCD/Generalized anxiety. He started at 2g and we worked our way up to 7g. (his dr. gave us the ok to go up to 8g) For him it's huge. It's like it took this giant thing hanging over his head and toned it down to something that's more manageable. He doesn't have ADHD though and I would not try it with my daughter who has anxiety issues who also has ADHD because of the stuff I read about it aggravating ADHD symptoms. That combined with L-Theanine means we no longer need melatonin for him to sleep at night. The theanine took the edge off of the anxiety but wore off too fast. The Inositol has a much stronger impact and lasts longer.

L-Theanine works great for my daughter with ADHD (we pair it with some coffee in the morning and she's much less impulsive). She tells me that it calms the anxious thoughts in her head within minutes of taking it, and will take an extra dose before certain activities that she knows will spike her anxiety (like a rambunctious social setting). 

I am looking into other supplements too, zinc is what we're currently working on and then Vit. D might be next. I like to do things one at a time to know what impact they make. I personally take NAC, I need to read more about that in kids. I have an appointment with a nutritionist in a couple weeks that I'm hoping will help with direction to go too. 

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1 hour ago, mamashark said:

My son takes inositol for OCD/Generalized anxiety. He started at 2g and we worked our way up to 7g. (his dr. gave us the ok to go up to 8g) For him it's huge. It's like it took this giant thing hanging over his head and toned it down to something that's more manageable. He doesn't have ADHD though and I would not try it with my daughter who has anxiety issues who also has ADHD because of the stuff I read about it aggravating ADHD symptoms. That combined with L-Theanine means we no longer need melatonin for him to sleep at night. The theanine took the edge off of the anxiety but wore off too fast. The Inositol has a much stronger impact and lasts longer.

L-Theanine works great for my daughter with ADHD (we pair it with some coffee in the morning and she's much less impulsive). She tells me that it calms the anxious thoughts in her head within minutes of taking it, and will take an extra dose before certain activities that she knows will spike her anxiety (like a rambunctious social setting). 

I am looking into other supplements too, zinc is what we're currently working on and then Vit. D might be next. I like to do things one at a time to know what impact they make. I personally take NAC, I need to read more about that in kids. I have an appointment with a nutritionist in a couple weeks that I'm hoping will help with direction to go too. 

Thanks so much for sharing this. 

ADHD is not an issue for us, so I'm feeling cautiously optimistic about starting inositol.

Can you please give an indication of how quickly you built up to the 7g? 

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Just now, chocolate-chip chooky said:

Thanks so much for sharing this. 

ADHD is not an issue for us, so I'm feeling cautiously optimistic about starting inositol.

Can you please give an indication of how quickly you built up to the 7g? 

I looked up my notes on how we titrated the dosage, we actually started at 3 grams and added a gram a week. We started noticing a calmer/happier kid by the end of the first week. At 5 grams I talked to his dr. about how high I could go because we were still dropping off in behavior prior to dinner. She gave me the green light to go to 8g. I stopped at 7 grams because the improvements in mood/behavior were level all day, with no significant drop off in behavior prior to the evening dose. 

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6 minutes ago, mamashark said:

I looked up my notes on how we titrated the dosage, we actually started at 3 grams and added a gram a week. We started noticing a calmer/happier kid by the end of the first week. At 5 grams I talked to his dr. about how high I could go because we were still dropping off in behavior prior to dinner. She gave me the green light to go to 8g. I stopped at 7 grams because the improvements in mood/behavior were level all day, with no significant drop off in behavior prior to the evening dose. 

Thank you 🌻

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20 minutes ago, chocolate-chip chooky said:

Thanks so much for sharing this. 

ADHD is not an issue for us, so I'm feeling cautiously optimistic about starting inositol.

Can you please give an indication of how quickly you built up to the 7g? 

 

For us it seems helpful for adhd-like symptoms also—but we don’t have adhd dx.

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