Inositol/Choline

[911RN]

Has anyone used or continue to use Inositol/Choline supplement for OCD behavior? If so, what dosage? If used in past and stopped, why?

 

Thanks!

[MomWithOCDSon]

Are you asking about a supplement that combines inositol and choline? Never tried that; wonder what the choline brings to the picture . .. do you know?

 

We did try inositol for OCD and unfortunately never really saw any positive impact from it. But I know that others here on the forum have used it to good results, so it seems to vary from person to person.

 

Frankly, because my DS was taking SSRIs for years before we found PANDAS and started researching some alternative ways of addressing not just the PANDAS but also the OCD behaviors it brings to the table, we may have impacted his body's way of producing/absorbing its own serotonin to the extent that any positive impact something like inositol would otherwise have had became negated. The other possibility, I'm thinking, is that at the age of 14 and 140 pounds, perhaps we would have to give him an exhorbitant amount of inositol for it to make a dent in his OCD behaviors.

 

What we've found that has seemed to help the OCD notably, however, is another supplement called NAC, or n-acetylcysteine.

[LNN]

We used it for about 10 months with some success. It didn't get rid of everything, but it made it more manageable. DS only had OCD issues when he was in really bad episodes. He's primarily a ticcer. We used to to manage his anxiety and never dosed high enough to try to address the OCD. (We built up to 5g @ 50 lbs over 6 weeks but probably could have built up a little quicker). But it did help with the anxiety. We stopped using it when abx and a T&A put him into remission for a time. When DS had subsequent episodes, Cognitive Behavior tools kept his anxiety at bay and we didn't feel the need to use inositol again.

 

Here's some reading that may be helpful

a. http://en.wikipedia.org/wiki/Inositol

b. http://www.nutritionj.com/content/7/1/2

c. http://www.naturaladd.com/resources/articles/natural.html

d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/

 

One of them - don't recall which - suggests doses to build up to over 6 weeks, but they're for an adult. So you need to do some math to figure out a schedule for a child.

 

For a time, I used it as well, to help me cope with the stress. It did take the edge off but I got lazy and stopped when DS stopped.

[dcmom]

Mom-

 

what type of NAC dosages did you use!

[MomWithOCDSon]

Mom-

 

what type of NAC dosages did you use!

 

NAC is another supplement that's best to start low, mostly because it can have gastro-intestinal consequences (gas) if you go at it too hard and fast, I think. We started out at 600 mg. per day (one capsule in the morning), and increased it at first to 1,200 mg. by adding another capsule in the evening. Then we ramped it up by another capsule in each of the morning and evening until he was taking 2,400 mg. total. Finally, after reading about a Yale/NIMH study for adults with NAC and seeing their dosages, we took it up another 600 mg. to where he's currently at: 3,000 mg. per day (at about 125 pounds when we began the NAC, and 140 pounds now, our DS is basically adult-sized). Here's a link to that study's parameters:

 

Yale/NIMH NAC Trial for Adults

 

Searching again just now for THAT link, I found the following one which provides parameters for a current study involving kids, OCD and NAC. I'm not sure if, in looking at it, the dosages they're using now for kids are actually lower or higher, in total, than what they used for the adult study (it's written a little confusing; maybe a call to Yale would clarify):

 

Yale Kids OCD and NAC Study

 

Here's another link to one of the most complete papers I've seen regarding OCD and glutamatergic dysfunction; it talks about NAC and riluzole as possible treatment options:

 

Glutamatergic Dysfunction in OCD

 

Finally, I should say that it's been recommended that, when taking NAC, you increase the amount of Vitamin C alongside it; the Vitamin C, I guess, helps counter any potential oxidative stress from the NAC. So we've increased DS's QBC (quercitin, bromelaine, Vitamin C combo) supplementation along with the increases in NAC. Here's a link to some information in that regard.

 

NAC and Vitamin C

 

Sorry to hijack an inositol thread!

[SSS]

I did try Inositol, and didn't see an impact. I probably did not give a high enough dose or give it enough time, but...while on it, it was suggested to me to add choline. I did, and had a negative reaction, so I pulled both.

[trggirl]

Choline would help with acetylcholine. If you do searches, you will see some success at treating tics with acetylcholine boosters in the 1980's. Also studies on DMAE treating ADHD. DMAE also increases acetylcholine supposedly. I have been very interested in this pathway for a long time.

Edited May 24, 2011 by Trg girl

[911RN]

Choline would help with acetylcholine. If you do searches, you will see some success at treating tics with acetylcholine boosters in the 1980's. Also studies on DMAE treating ADHD. DMAE also increases acetylcholine supposedly. I have been very interested in this pathway for a long time.

 

My son developed his first, "out of the blue", real, known, vocal tics summer 2009- hooting and peeping (bird noises). We were in diagnostic mode, at that time, and on a ramp up of Keppra for abnormal EEG. We blamed it on that. Now, we feel it was likely a PANDAS flare. DS was not bothered by it and we had big neuropsych eval upon us- Neuro said do nothing. Otherwise, he would have ordered Tenex but did't want test results skewed by starting new med. Meanwhile, I was going crazy living in the bird sanctuary:) I researched Inositol and choline (at that time) and put him on it- tics diminished rapidly within a couple weeks on fairly low dose and we noted no side effects. We stopped it once he changed to Depakote.

 

It is researched to be very helpful for OCD (which he did not have at the time) so that's why I posed the question - that is THE main issue now, not tics. Tics have diminished rapidly on Azithro. OCD lingers. THANKFULLY, we have never had return of bird noises in 2 years. Last vocal tics were cough tics which actually bothered him but I could live with. Gone now- so we are both good:)

 

Anyway, the reason I did Inositol/Choline combo (at the time) was I read research they should be given together if given at all. Have a synergestic type effect. Almost like opposing ions- don't give one without the other. If you do- things get imbalanced. You can buy pills that include both ingredients. So, there must be something to this?? Whether that is really true or not- I don't know. That was something I researched 2 years ago and I'm not sure I could find it again if I tried:)

 

Mom- I took in all the info on NAC, too, on this string- no worries on "hijacking" Inositol thread. With supplements- it's all good to get feedback on what works and what does not:)

[trggirl]

911RN, would you mind talking about your Depakote experience. We are on a trial of it right now and I am getting very discouraged and wondering if I need to stop it.

[MomWithOCDSon]

Regarding inositol and choline together . . . I, too, see a lot of the combined supplements offered for sale, but nearly all of the literature available on line regarding the two is provided by the supplement companies themselves, and they range from vitamin dealers to weight loss enterprises and body-building programs.

 

Following is one of the few links I could find that opines experientially on the use of inositol and/or choline, specifically for OCD. It still isn't exactly "scholarly" and I don't know this group that's published these opinions, but pieces of it are interesting to me, anyway.

 

Alternative Medicine for OCD

 

A couple of statements here stand out to me:

 

"My clinic has used inositol with thousands of patients & learned the following:

 

A. Inositol is usually very helpful for UNDERMETHYLATED, HIGH HISTAMINE patients. This includes nearly every OCD patient we have seen. Inositol usually provides calming throughout the day and ability to settle down to sleep at night, for these patients.

 

B. On the other hand, OVERMETHYLATED patients usually derive little or no benefit from Inositol, and may experience very nasty side effects from it."

 

Also, for what it's worth:

 

"Most OCD patients (both obsessive thoughts AND compulsive actions) exhibit undermethylation and associated low levels of serotonin, dopamine, and norepinephrine. Choline is anti-dopaminergic and often makes OCD patients worse.

 

Generally, OCD patients respond nicely to methonine, SAMe, calcium, magnesium, B-6, Inositol, TMG, and zinc. Most OCD patients get worse if given supplements of DMAE, choline, copper, or folic acid."

 

It seems as though, not unlike nearly everything else in PANDAS, what helps one won't necessary help another. Or then again, it might!

[911RN]

911RN, would you mind talking about your Depakote experience. We are on a trial of it right now and I am getting very discouraged and wondering if I need to stop it.

 

 

I sent your reply by PM:)

[momcap]

We have tried both, without success. Although perhaps we didn't give it a long enough/fair trial. We originally used it in addition to the supplement called "EMP+" from Truehope, hoping to manage DS7's mood disorder. We didn't recognize OCD as the major factor in his difficulties at that time, although looking back it was major. We were more focused on the defiance, aggression and rage. Anyway, as a combo, all 3 things (EMP+, choline and inositol) made an amazing improvement in his negative mood. Unfortunately the new good mood just kept going up and up until he was full-out manic for the first time ever. Very scary. Then he kept saying his brain felt cold and he had a spacing out incident at school, then was 105 degrees and ended up with strep. The months after that were a NIGHTMARE of OCD, verbal tics (we also get the birdy noises: hooting, beeping, chicken noises, etc) and mood lability. So I don't know if these supplements might have helped if he hadn't got an active strep infection right then. Maybe I should try again? I have a whole cupboard full of supplements we've tried and given up on.

 

The salesperson at Truehope told me that Inositol calms the body and Choline calms the mind. I doubt it's as simple as that. But I did take choline when I felt mentally agitated (PMS), and it helped fairly quickly. It could have been placebo, but I was happy either way.

 

I haven't researched these supps. This is just our personal experience with them.

[trggirl]

Thanks for sharing Momcap! Interesting. I too wonder if the mania was from the supplements or the strep??