Vitamin supplementation WORKS - start taking them!

[kurtosis]

OK. The other advice stands.
I'd take the spirulina around lunchtime.
I start my day with the b complex and methionine. It's a good combination.

[vetrofragile79]

Hi kurtosis can I ask you a summary?
What brand do you recommend for the b-complex?
I only take niacin, samyr I have never had an effect in the past.

I'm also experimenting with the niacinamide but it is very difficult to understand the effect

[kurtosis]

This pretty much all depends on genetics.

I like Thorne Extra Nutrients but the issue is whether someone can tolerate folic acid or whether they should only have methyl folate. Some people have both a methylation mutation (affecting either b12 or folic acid methylation) but someone can also have COMT mutations which means that they would clear dopamine or norepinephrine too slowly which means they'd have less tolerance for methycobalamin and methylfolate.

This is complicated and depends on mutations to gene producing MTHFR enzyme. So there's no one size fits all answer.

[vetrofragile79]

Speak of the b-complex or samyr?
I did not understand which part of the complex I have to check that risks are there?
what are the choices? Thorne Extra Nutrients and?

thank u so much

[kurtosis]

Speak of the b-complex or samyr?
I did not understand which part of the complex I have to check that risks are there?
what are the choices? Thorne Extra Nutrients and?

thank u so much

The choices depend on whether you know you have a mutation to any of the methylation genes. Specifically, particular MTHFR or MTR mutations suggest that the person should not take normal folic acid (iron) or b12 and instead should take the methylated forms of these. If someone has the problem they should avoid any b complex which has folic acid. It actually impedes the body's ability to use methylfolate.
People with these conditions often take deplin or metanx. Some people have a specific mutation that reduces the level of BH4. This may give them symptoms which are similar to but not as severe as phenylketonuria. The treatment would be similar. A restricted diet and supplements to stimulate BH4 OR synthetic BH4.  It's not possible to say anybody has one or the other problem without tests.

So I can't recommend any brand without knowing what problem someone has.
I see 2 choices.
1) try to reduce mast cell release of histamine and perhaps prostaglandins by taking a mast cell stabiliser. Something like ketotifen. Consult with your doctor.
2) try to determine if you have cannot clear histamine adequately because you have an underlying methylation problem. Again, your options are DTC genetic testing & finding a doctor to consult with.

Currently I'm trying 2 but I keep a mast cell stabiliser handy. You really need to find a doctor who is happy with looking at these approaches and working with you. 2 requires careful introduction of a range of supplements with dose variation depending on results. 1 obviously requires some doctor's supervision as it's a prescription drug. You could try quercetin as an alternative to 1.

See http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033805
but it would take some time to work and I've no idea how effective it would be. May be great as it seems to have noticeable prophylactic affect. It may not. It seems safer in the long run than taking something like clarityn D or a calcium channel blocker.

[Nightingale]

So, how to find out if one shouldn't take folate without doing a genetics test: just take folate and see if you don't feel well?

Ive seen the Methl-Guard product they also offer, which i'm guessing has what you are saying is a methylated version of folate.

I honestly just stare at these posts, and don't understand what I should do!  Well, I suspect the COMT gene issue for myself, as I've had problems with virtually all drugs that increase, decrease, or interfere with dopamine and norepinephrine.

I'm having a hard time tying together all the pieces of the puzzle you've laid out kurtosis, why is folate now a major factor in your treatment of POIS?  It's not something I've spent time looking into before, and I'm feeling lost.  I am going to try one of those supplements out there, because I believe in the undermethylation theory.  Now, what do I do?  I would just start taking Methyl Guard or a similar product, but I'm caught up with this folate business and why you prefer this other product, which I now see has a TON of ingredients.

I could use your brain for a moment kurtosis, mine isn't working quite right right now!

[demografx]

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[kurtosis]

So, how to find out if one shouldn't take folate without doing a genetics test: just take folate and see if you don't feel well?

Ive seen the Methl-Guard product they also offer, which i'm guessing has what you are saying is a methylated version of folate.

I honestly just stare at these posts, and don't understand what I should do!  Well, I suspect the COMT gene issue for myself, as I've had problems with virtually all drugs that increase, decrease, or interfere with dopamine and norepinephrine.

I'm having a hard time tying together all the pieces of the puzzle you've laid out kurtosis, why is folate now a major factor in your treatment of POIS?  It's not something I've spent time looking into before, and I'm feeling lost.  I am going to try one of those supplements out there, because I believe in the undermethylation theory.  Now, what do I do?  I would just start taking Methyl Guard or a similar product, but I'm caught up with this folate business and why you prefer this other product, which I now see has a TON of ingredients.

I could use your brain for a moment kurtosis, mine isn't working quite right right now!

Nightingale. I can't tell you what to do. It seems like a puzzle because it is that.
Methyl Guard contains methyl folate. However, it won't work for everybody. Some people can't tolerate the amount of b6 or b12 in it and require other supplements. There really is no easy answer. I took it and got over an orgasm very quickly. The down side was that I felt completely wired. I went from possibly undermethylated to overmethylated (possibly, who knows) by taking 3 of the capsules. That convinced me more than anything that I needed to know my genetics.

If you look at the MTHFR.net blog and fora you'll see that people who respond well to it do not necessarily respond well from the very start. It's very difficult to judge. Some people just feel great. Others get a bit sicker at the start. My gut feeling is to try a simple 1mg methyl folate supplement and see if that improves things over 2-3 weeks.  Nothing else but methyl folate.

I have no idea why you don't respond well to NADH. I respond very well to it. I felt slightly odd during the first week but it was great after that.
But I may have too little BH4 under stress and NADH provides another way to recycle that. NADH appears to increase certain markers of methylation despite the fact that it itself does not have a methyl donor.
The body is complex and a supplement can work for a reason which is entirely unrelated to the reason it's normally consumed for. That also means any supplement (particularly herbs) can have unintended consequences as they don't do just one thing.

I have no idea why others say methionine does nothing for them. It works great for me and should absolutely reduce histamine levels. B_Daniel still seems happy with SAM-e. It's not perfect but a big improvement.

My genetics may simply be different. It may be that I appreciate that an O will upset homeostasis so I don't have that many. The things that have worked for me have genuinely worked and helped me understand the chemistry of these reactions so much better than when I started.  So rather than theorise about it I have to see the concrete facts of what enzymes in my body are likely to be performing less than optimally based on one or more mutations. That's all I can do. As soon as I know more about me I'll tell everybody but those results are personal and may not apply to everybody.

Otherwise I can't decide between possible causes for POIS like
- genetic (with known methylation mutation)
- genetic with unknown mutation (and I'll check pretty much every gene I can against the known databases as I have some software to do this)
- bacterial infection of some sort
- auto-immune disease
- something like mastocytosis (basically, too many mast cells).

If you get nowhere with methylfolate over 3 weeks then the next option is to ask your doctor about ketotifen which is a well known mast cell stabiliser. At the least, it may reduce the desire to have an O as there'd be less histamine in your body. If you don't want to try methylfolate then you could try a mast cell stabiliser immediately. Ask your doctor about it. I don't see that there's that much to lose so long as there's no negative interactions with your existing medication.

It's not about being convinced by one theory or another. I know Clarityn D works wonders. Now I'm seeing others are finding the same thing but these are not long term fixes. But in the short term, the easiest path to good results may be to try a mast cell stabiliser like ketotifen, under medical supervision. If I subsequently find a really good reason why methylation may cause POIS in me, I'll be sure to tell everybody about it

So you have 2 clear options to discuss with your doctor
1) methyl folate
2) ketotifen

[poisioq]

methyl folate looks to have some side effects to take in consideration :
http://mthfr.net/methylfolate-side-effects/2012/03/01/

[Nightingale]

Thanks guys, that helps a lot

[kurtosis]

methyl folate looks to have some side effects to take in consideration :
http://mthfr.net/methylfolate-side-effects/2012/03/01/

I experienced some of them and realised that 3 capsules a day of methyl guard for 5 days was just too much for me at the start
But it was kind of funny as I felt better AFTER an O. I went from "wired" to just about right. It was actually funny and I had the rare feeling that people actually have O's not just because of necessity but because they relax them.

It was an interesting experience but all those previous comments about genetics still stand. For example, some people (SUOX mutation) don't efficiently dispose of sulfur products. If they take SAMe it could lead to a rise in sulphites and/or ammonia levels. Not good but they could use Molybdenum to reduce those levels. Some people could take synthetic BH4 to reduce ammonia if they can't make enough of their own. (possibly because of MTHFR a1298c mutation) Some could increase BH4 via recycling using NADH. Boron helps too. There are multiple chemical cycles at work here and the same thing may not work for everybody and different people may have different problems.

So even if POIS is a methylation problem, tackling it via the nutritional route is not easy. But unless someone has 2 MTHFR mutations (+/+) and is COMT (+/+ ) then the thorne extra nutrients product might contain most of what they need and it can be taken in smaller dosages  as the correct dose is likely between 1 and 6 capsules / day. So there's some flexibility there but it's an expensive supplement and I'm not buying anything else myself until I see my test results.

To give another example, if you have high levels of histamine you're likely to benefit from antioxidants like Vit C, Vitamin E and Vitamin D3 which is actually a steroid. CoQ10 helps too but buying all these separately is not cost effective and the dosages provided in individual supplements are arguably more than anyone actually needs. So I'd rather get some extra of these from taking 1 or 2 tablets then buying a cabinet load of individual supplements. But in order to figure out what the best multi vitamins to buy are, I'd like to know what supplements might be most beneficial for me and what might be a problem. 

This is not a recommendation. I'm just describing how I'm thinking about all this.
But  it seems more straightforward for most people to take a mast cell stabiliser & see how they get on

One last thing. I doubt if anyone with POIS needs extra calcium if they have a normal diet but they may need extra D to help absorb the calcium from the food they eat.  Extra calcium will actually bind with magnesium and cause it to be excreted so loading up on calcium supplements may take magnesium from your body. A calcium overdose would be a seizure. Some doctors believe there's a connection between calcium./magnesium imbalance and migraines.  Note that Nathan is achieving some success with a calcium channel blocker. While I think that may be too much in the long run, I think that high levels of calcium supplementation may actually worsen POIS symptoms. You're probably better off with dietary calcium and a small amount of extra magnesium and a lot of vitamin D3. Or skip the calcium and magnesium and just take the D3.  Just an opinion ...

[Vincent M]

For me, a B-Complex about 8 hrs after orgasm helps the joint pain.

I take one 8 hrs after and another on the next day.

I've been taking a highly bio-active B-Complex once a night for the past 24 days. 7 days into b-complex I started 500mg of acetyl-L-carnitine morning and night for 13 days. About 4 days after I started ALC I noticed an improvement in my joint pain, muscle strength, eye burning, face irritation, scalp itchiness, and perhaps cognition.

I also took 500mg methionine once a morning for 6 days starting at day 7 of B-complex/ALC, but it seemed to cause a slight worsening of symptoms.

For the past 4 days I've only been taking B-complex to determine whether it or ALC or both were improving my symptoms. I still feel improved symptoms, but it might be a residual effect of the ALC.

This is the B-complex I'm using: http://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-caps

Thiamin (vitamin B-1)                              54.4 mg   3,627%
(as benfotiamine)                                     
Riboflavin (as riboflavin 5'-phosphate)       50 mg   2,941%
Niacin (as inositol hexanicotinate)              100 mg   500%
Vitamin B-6
(as pyridoxal 5-phosphate)                       50 mg   2,500%
Folate                                                   800 mcg   200%
(as Quatrefolic? [6S]-5-Methyltetrahydrofolic acid equivalent to 1.6 mg of [6S]-5-Methyltetrahydrofolic acid, glucosamine salt)
Vitamin B-12                                           500 mcg   8,333%
(as methylcobalamin)
Biotin                                                      50 mcg   17%
Choline                                                   50 mg   *
(as choline dihydrogen citrate)
PABA (para-aminobenzoic acid)               50 mg   *
Pantethine (coenzyme A precursor)           50 mg   *
(from Pantesin? 80% pantethine)
Inositol                                                   25 mg   *
(from inositol hexanicotinate)

After analyzing my diet I noticed it looked low in b vitamins. This is the site I used to determine this: http://nutritiondata.self.com/

[Vincent M]

It appears we should be careful with our synthetic folic acid(B-9) intake:

"A high intake of folic acid might mask detection of vitamin B12 deficiency and lead to a deterioration of central nervous system function in the elderly. In one study, consumption of folic acid in excess of 400 micrograms per day among older adults resulted in significantly faster rate of cognitive decline than supplement nonusers. (11) Another study found a higher prevalence of both anemia and cognitive impairment in association with high folic acid intake in older adults with a low vitamin B12 status. (12) As vitamin B12 deficiency is a common problem for many older adults, these studies suggest that high folic acid intake could cause serious cognitive consequences in the elderly."
http://chriskresser.com/folate-vs-folic-acid

Apparently methyl folate/5-methyltetrahydrofolate/5-MTHF is the safe form.

[Vincent M]

Correction to my post about my b-vitamin trial. I had actually been taking the b-complex 7 days before I started ALC and for 24 days total. I think that was a bit too long to be taking that much once a night since it seemed I was starting to get odd tiny pain flashes in my joints that I previously didn't have. The past 2 days I stopped taking it and this sensation disappeared but my POIS symptoms still are generally improved.

[Daveman]

Correction to my post about my b-vitamin trial. I had actually been taking the b-complex 7 days before I started ALC and for 24 days total. I think that was a bit too long to be taking that much once a night since it seemed I was starting to get odd tiny pain flashes in my joints that I previously didn't have. The past 2 days I stopped taking it and this sensation disappeared but my POIS symptoms still are generally improved.

Of course every one's different, and when I took the B-Complex daily and niacin 1 hr before, my sex was better but my POIS was worse.

So I dropped the B-Complx, but just by chance, taking one pill the day after really helped my joints. Taking the B-Complex for more than 1 day didn't seem to
do anything, other than perhaps to start to make it worse again.

So far I've adjusted a bit.

Niacin 1 hr before, The next day when the joints start to act up, one B-Complex and MAYBE another one the next day if the joint problems are a bother.

Any more than that and the effects begin to become negative.

Trials are few though,

[Vincent M]

Today was my fifth day on acetyl-L-carnitine without b-complex. I had disruptive pain in my knees and eyes for the first time in a while today so I'm going to assume for now that both the vitamins and ALC played a role in my improvement. I'm impatient to move on with trials for some herbs I haven't opened yet, but I'll continue taking ALC once or twice a day and b-complex about 3 times a week.

[asdfdoc]

so did anyone try clonidine or intuitiv?

I am very interested in this. Currently on lexapro for anxiety and ritalin. lexapro makes me tired, i think it has some norepi component to it. Ritalin is hit or miss for me. Ritalin actually makes me tired but not so much pns stimulation as adderall. Adderall made me feel exactly the same as handicat. clonidine is an add med, i might ask my pdoc for this.

CertainlyPOIS, I honestly think ur reaction to adderall has alot more to do with high levels of noradrenaline/adrenaline than it does with low dopamine. I get the exact same response to adderall. Actually when I take adderall my heart races so fast and pumps so hard there were times I thought I was going to die, plus I would pee an insane amount, all indication that noradrenaline/adrenaline are being dumped at a massive rate in the body.

This would make sense since Kurtosis and I have landed on the idea that this is a noradrenaline problem going on, it seems us POISers have too high levels of this stuff and orgasms wreak havoc on us because of this.

Another way to put it is this: our bodies can easily get triggered into a fight/flight response, which is why Kurtosis always mentions that alot of doctors treat POIS as an anxiety disorder. IF we want to get all medically technical having an easily triggered fight/flight response would actually be an anxiety problem, its just that for us it seems our anxiety gets triggered mainly just by orgasms, and is not our baseline personality.

Another interesting thing: Hyperadrenergic POTS is dealt with usually with two medications: 1. Clonidine(prevents the release of norepinephrine) and Mestinon(the prescription version of Huperzine A, which allows acetylcholine to stay around longer, and compete with the fight/flight mechanisms of norepinephrine/adrenaline).

I wish someone on here could get some CLonidine somehow and try it out, or some herbal equivalent. I have a heart condition and am seeing my doc pretty soon, im going to ask and see if I can get some.

Will be interesting to see if you could get clonidine. I was speaking with B_Daniel about it as an easier alternative to the "Kurtosis Cocktail" which walks a bit of a tightrope between too much and too little dopamine raw materials on a daily basis. If you take too much then you increase norephinephrine too much with bad results.

[nenexx]

Have read through a lot of the thread. I have 2 questions: Shall I go for the cure that's mentioned in the start or has anything changed? And I also find this about Ginkgo: http://well.blogs.nytimes.com/2013/04/29/new-doubts-about-ginkgo-biloba/?ref=health - What do you say about this?

EDIT: 1 more actually. What do you say about green tea? Good or bad?

[Daveman]

Well, there is no known cure to date....

Which one are you referring to exactly BTW.

It seems that some things help some and not others, no one thing seems to work for everybody.

I still think the jury is out on the desensitization process, its a long painful process that may or may not help.

Niacin works usually very well for those for which it actually works, but again, it doesn't work for all. At least it's not a long and painfull process to try.

Some have found that Fenugreek and garlic help, and some even say that the two together (Fenugreek, garlic) and niacin work wonders.

Vitamin B Complex works for some, makes it worse for others, and in many the effects tend to wear off after a time.

Each one here can maybe make his suggestion, but the real proof will come with research. Our personal trials are very uncontrolled. It's very difficult to make decisions when you don't know what preconditions were, if other things you have taken or eaten effect the outcome, if the weather that day
had some effect, and if your body represents that of the whole group or if you are different among the group for some
genetic variance or other health pre-condition.

All we can do is try to find relief one way or the other meantime.

I personally would suggest niacin..... Will that work for you? Who knows. Most who try it and find that it works, wonder why they waited so long.

[nenexx]

Yeah I know it's no known cure. I'm referring to the one in this thread. I wanted to know if that's the one people are using or if it's changed. Probably not. "Vitamin B Complex works for some, makes it worse for others, and in many the effects tend to wear off after a time."  "and in many the effects tend to wear off after a time" Where did you find this? I don't think I find it in this thread, maybe I missed it? Already tried niacin and it works for the part after orgasm, but I still have problems overall and I think it's related to dopamine which is the problem this "cure" is trying to fix, am I right?

Whatever, I will just try it and see how it works.