15 yo Daughter is COMT V158M+/+ and COMT H62H+/+ suffering from severe OCD and anxiety

[sregan]

I've read that another thing that helps with OCD is boosting the serotonin system. This can be quite effectively with high dose inositol powder, if you don't want to go down the pharmaceutical route (inositol is a vitamin). I use high dose inositol myself quite a bit, in my case to help counter depression. Dose levels are around 2 heaped teaspoons of the powder. More info on inositol for OCD here.

Combining a serotonergic boosting agent like high dose inositol with anti-anxiety supplements like NAG will presumably be more effective that either on their own.

As I mentioned earlier in the thread I'm leary of messing with her Serotonin because she is MAO A +/+. The mutli I'm giving her I mentioned has choline and inositol in it but it's a very small dose for each. Not sure if that's what is helping her from the multi.

I read very low dose amisulpride may be beneficial for ME/CFS, and it was one of the things that I randomly just tried out. I find it excellent, and still take 12.5 mg daily. It helps a lot with the sound sensitivity problem of ME/CFS, and I also find it reduces the irritability mental state that is common in ME/CFS, plus it boosts energy. So I think this is a great drug for ME/CFS. These drugs can trigger diabetes as a side effect, but I think because I am taking such a low dose (1/100 th of the normal dose), this risk will be much smaller.

That interests me, I might persue giving that a try.

 

[Hip]

As I mentioned earlier in the thread I'm leary of messing with her Serotonin because she is MAO A +/+. The mutli I'm giving her I mentioned has choline and inositol in it but it's a very small dose for each. Not sure if that's what is helping her from the multi.

Fair enough. Is there a consensus that those with MAO-A R297R +/+ should avoid increasing serotonin?

High dose means around two teaspoons of inositol powder, which is about 10 grams. So this is much, much higher than multivitamin doses of inositol, which are typically around 50 mg. I have taken high dose inositol on and off for years, mainly for antidepressant purposes (although it has anti-anxiety effects too). I find that you can start and stop the inositol as and when required. It does not have any withdrawal or start-up problems like SSRIs.

 

[sregan]

Fair enough. Is there a consensus that those with MAO-A R297R +/+ should avoid increasing serotonin?

High dose means around two teaspoons of inositol powder, which is about 10 grams. So this is much, much higher than multivitamin doses of inositol, which are typically around 50 mg. I have taken high dose inositol on and off for years, mainly for antidepressant purposes (although it has anti-anxiety effects too). I find that you can start and stop the inositol as and when required. It does not have any withdrawal or start-up problems like SSRIs.

I read enough to convince me that boosting serotonin is probably not a good thing for her. I was giving her Tryptophan with B3 and p5p which either didn't help or made the anxiety worse. I did not respond well at all to my 2 trials of different SSRI's and her genetics are worse than mine for COMT. The last thing I want to do is make her worse. While I will experiment on myself I can't do that with her. I got to do my homework before giving her anything.

I read that high dose Inositol works for some, not for others, and can make some much worse. So I wasn't willing to take that chance as long as we are seeing good results with what I'm giving her now.

I can imagine a time when genetic testing is done by psychiatrists before they prescribe instead of just going round robin with the usual suspects based purely on symptoms. The week I was on prozac was the worst of my life. My guy finally tried bupropion which helped me years ago. I see that kind of roulette being avoided in the future using the patients genetics.

 

[Hip]

Yeah, I had also had bad effects from taking SSRIs. Just taking one pill of citalopram caused an intense suicidal ideation thoughts in me for around 12 hours, until the drug was out of my system (this is a known side effect of SSRIs, and and black box warning on SSRIs).


Though I am a little skeptical about there being any substance to many of the hypotheses about SNPs you see on this forum.

 

[sregan]

UPDATE: 2014-11-13

Vitamin D3 is helping her OCD tremendously!

After having some success with supplements (mostly temporary). I remembered my daughter always seemed to be in a better mood when I was giving her vitamin D. I started her on 1000 IU twice per day (morning and bedtime). Her anxiety almost completely disappeared after the first day. I upped her to 2000iu twice per day to get her levels up as quickly as possible. She reported some anxiety after 3-4 days of this so I backed her down to 1000 x 2 again where she's been for the last week.

She is doing very well. Her OCD was getting worse. She was having a problem writing. Her intrusions were being triggered by her writing so she basically stopped (trigger avoidance). Not good for someone in school. She was able to just erase the last character/letter she wrote if an intrusion happened and try again. It was excruciating to watch her write. She would get 2-3 letters and back to erase and sit there with pencil poised waiting for a mental opening to try the letter again. It broke my heart to see this.

She was also having what's called a "mini ritual" of distracting herself. She wasn't doing schoolwork or anything else just on her phone and tablet distracting herself with blogs and videos, pinterest and such.

So at this point we had tried most everything supplement wise and was thinking about the drug route. The Vitamin D has worked so well she is able to write normally! I've been working with her to get her back on track in school. I had to sit with her to get her through doing homework. This week she has gone back to doing it by herself. Last night finished all her Chemistry homework by herself. This is a straight A student who brought her progress report home yesterday with 2 F's and 2 C's.. poor child. The OCD has basically put her life on hold. She has done well to hold herself together this far.

Since the 2 weeks since I started the Vitamin D she is now back to her cheerful old self.

Her daily supps are as follows:
Morning: 200mg Ester C 24 hr immune support, 1/4 Jarrow Multi, 15mg zinc, 10mg p5p, Jarrow Mineral Balance, D3 1000IU
Evening: Beta SitoSterol (cortisol reduction/ sleep), Glycine (reduce glutamate), D3 1000 IU

I'm pretty sure she would be just fine without anything but the D3 and will be scaling back her other supps one at a time to find this out.

Praying that this time it stays.

Note: I wrote this addendum for those interested here but also for anyone doing a web search that they may find also. I didn't consider Vitamin D at all. It may help others, may not but something to try.

 

[sregan]

I just added a blog addendum post here. Hoping this can make the search engines and help others.

 

[sregan]

(The following also posted to my blog)

UPDATE: After a terrific month her symptoms returned. The Vitamin D cure was a little to simple I'm afraid. I had to really dive into her genetics and saw I was ignoring the COMT++ (VDR Taw +-) and the MAO++. I was, however, aware not to give her methyl donors. I found that with that genetic combination she's probably overloaded with Dopamine. High dopamine has an OCD link (Basil Ganglia) and I just found a link between increased Vitamin D levels increased Dopamine. I also found a link between increased stress and increased Dopamine. This could have been the "trigger" for her OCD.

So currently I have been letting her Vitamin D levels drop (by not giving her any and keeping out of the sun) and giving her DGL (Licorice) to reduce dopamine and Lithium to hopefully speed up COMT (Might try Niacinimide for this also). She has shown some improvement from this and hoping it's the missing piece here.

She needs the Vitamin D, no doubt, but when we resume I'm gonna have to give her less than I have in the past. It seems there is a narrow "sweet spot" for her between too much and too little. Now if I have guessed right and can get the Dopamine under control we may then be able to increase Vitamin D levels at a higher rate.

Other dopamine reducing supplements I've found are: Tryptophan, Noni, Bacopa, White Mulberry, Magnolia Bark.

 

[ebethc]

Yesterday we added back 5mg Lithium in the morning and evening to hopefully boost her COMT.

lithium orotate? what type of lithium? thx

 

[sregan]

lithium orotate? what type of lithium? thx

Dr.s best Lithium Orotate. I just got some Noni powder and Magnolia bark and will try those. Need to find a balance between her Vitamin D levels and too much dopamine. As long as I can monitor her stress levels and respond accordingly with more of the dopamine reducers I think we'll do good.

 

[ebethc]

Dr.s best Lithium Orotate. I just got some Noni powder and Magnolia bark and will try those. Need to find a balance between her Vitamin D levels and too much dopamine. As long as I can monitor her stress levels and respond accordingly with more of the dopamine reducers I think we'll do good.

which snp's indicate too much dopamine? does lithium orotate lower dopamine? thx

 

[sregan]

The COMT V158M++ and MAO A R297R++ working off this article

"Remember when I said that brain function is a bell curve with dysfunction on either end? Well when people with COMT genes become overly stressed they end up with TOO MUCH DOPAMINE in their frontal lobe. This excess catecholamine activity pushes the individual off to the right-hand side of the curve, interfering with output of the frontal lobe. This causes a DECREASE in brain function as you can see in Figure 3 above. Excess dopamine/catecholamine activity in the frontal lobe predisposes individuals to burning out, insomnia, pain, anxiety, worry and in severe cases schizophrenia and psychosis."

 

[Valentijn]

The COMT V158M++ and MAO A R297R++ working off this article

A few issues with this:
1) Just because a gene can have a certain impact doesn't mean those particular SNPs are relevant. It's known that the majority of SNPs are not relevant - hence they all should be considered innocent until proven guilty by real research. In the case of MAOA R297R we already know it isn't relevant.

2) That's not an article. It's a blog with no citations.

3) It's a commercial source, not a scientific one. This is the same problem with claims directly from Yasko, etc. They have a strong motive to overstate the intensity and commonality of problems, or to make up those problems entirely.

 

[sregan]

A few issues with this:
1) Just because a gene can have a certain impact doesn't mean those particular SNPs are relevant. It's known that the majority of SNPs are not relevant - hence they all should be considered innocent until proven guilty by real research. In the case of MAOA R297R we already know it isn't relevant.

2) That's not an article. It's a blog with no citations.

3) It's a commercial source, not a scientific one. This is the same problem with claims directly from Yasko, etc. They have a strong motive to overstate the intensity and commonality of problems, or to make up those problems entirely.

@Valentijn
I'm not sure where to go then. I'm assuming the info for the COMT V158M++ in the article is valid then since you didn't dismiss it. Can you point me to your source that indicates MAO R297R is irrelevant? Also if you have information on the relevant Snps for OCD can you provide them?

Speaking for myself I count on these articles to digest the scientific papers into something I can read and use. I don't have the background to easily run through these papers.

I know there is a SNP forum here and I've posted there a few times. Is that a good place to hunt down this type of info?

 

[sregan]

Also exploring her MTRT A66G++ and MTRR A664A++ I think am going to start giving her small doses of HB12. I gave her a 1/4 1000mcg sublingual (along with some other things). She initially seemed worse, very quiet. But a couple hours later she was very normal, talkative and singing. I've already determined she need some amount of Vitamin D but I have to be alert for increased dopamine from that I believe.

 

[Valentijn]

I'm assuming the info for the COMT V158M++ in the article is valid then since you didn't dismiss it.

It probably has a mild impact. But all versions are extremely common, and the effect size of the alleles in relation to mental illness looks to be quite small. It doesn't cause any illness, but might make a tiny contribution.

Can you point me to your source that indicates MAO R297R is irrelevant?

Basic genetics. It's in the coding section of the MAOA gene, but the different allele results in an identical protein being produced. It's literally incapable of having any impact.

Also if you have information on the relevant Snps for OCD can you provide them?

There are no SNPs known to cause OCD, as far as I know. Researchers aften find SNPs which contribute a tiny amount to the risk of developing some mental illnesses, but even those findings are usually false positives.

 

[sregan]

There are no SNPs known to cause OCD, as far as I know. Researchers aften find SNPs which contribute a tiny amount to the risk of developing some mental illnesses, but even those findings are usually false positives.

Thanks @Valentijn for the reply. It sounds, in general, that you think looking into genetics for the purpose of treating mental illness is mostly a waste of time?

If so would you say the same regarding physical illness also?

 

[Valentijn]

It sounds, in general, that you think looking into genetics for the purpose of treating mental illness is mostly a waste of time?

Yes. The research at this point just doesn't tell us enough.

If so would you say the same regarding physical illness also?

Genetics can be useful, in finding undiagnosed diseases with a completely genetic cause. This might include some diseases which manifest as a psychiatric illness. But 23andMe is of limited use, since they test somewhat randomly, rather than targeting SNPs known to be problematic.

It can also be useful in finding weak points, such as common MTHFR mutations which are not pathogenic, but nonetheless have a big impact on folate metabolism and contribute to birth defects and other issues.

 

[sregan]

I've made a pretty significant discovery for myself at least I've documented here.

 

[sregan]

@ebethc sorry but perhaps your reply would be more appropriate in a PM or it's own thread? It doesn't at all reflect the topic of this thread.

 

[sregan]

Epilogue: My daughter is 17 not almost 18 and had a possibly stress induced relapse this year. The initially responded very well to Vitamin D for about 4 weeks then seemed to maybe become overdopamated.

We had some success with "anti psychotic" type supplements that reduce dopamine and I never found out if that would have resolved her issue with taking 1000IU vitamin D per day.

We are currently using activated Vitamin B-Complex with about 100-200mcg of Enzymatic Methyl B12 along with some extra magnesium, calcium and potassium. She became non-verbal for weeks at a time when I started having her take small amounts of MB12 which seemed to help.

The B-Complex has Methyl Folate described as (Folate(as Quatrefolic® [6S]-5-Methyltetrahydrofolic acid equivalent to 1.6 mg of [6S]-5-Methyltetrahydrofolic acid, glucosamine salt).

I assume we are gently boosting methylation.

she is COMT++ so I'm very watchful when giving her Methyl anything but after going down so many promising roads this is helping.