NICOTINAMIDE MONONUCLEOTIDE - NMN

bertiedog

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After watching the very interesting You Tube video that @Countrygirl posted I wanted to post that I have been taking zinc, vitamin C daily, nicotinamide and occasional selenium for years but no great obvious benefit. I have checked my vitamin D level and it shouldn't be any higher than it is so I have that covered. I also take essential fatty acids and coenzyme q10 plus a few other supplements including several of the Bs but not methyl folate or methylcobalamin because I have both copies of the COMT enzyme which slows things down and can make one intolerant of too many methyl groups. My blood test shows a high level of folate and good level of B12.

Recently, after my first Pfizer vaccine I developed a horrible massive HISTAMINE reaction to something in my breakfast so have since added in Quercertin and found out the reaction happens whenever I have any type of gluten free product except oats so naturally I have stopped these. Nine days ago I added in NMN which stands for NICOTINAMIDE MONONUCLEOTIDE 150 mg which is half a capsule of the supplement I bought from eBay. I started to notice a difference in my energy from the second day which has continued until yesterday when I had a severe migraine caused by something else. (This is what I thought this morning but further research has thrown up a connection to nicotinamide raising both serotonin and HISTAMINE). See the next post.

I have noticed an ability to be able to stand and do jobs in the kitchen for almost double the time to what I would normally be able to do before POTS kicked in and last week my number of steps according to my Fitbit were considerable up, actually to just over 10,000 a day which is ridiculous for me. Normally at this time of the year it would be more like 8000 as long as I stayed virus free. I had no PEM even though on some days I knew I was pushing it but there were lots of gardening jobs I wanted to do.

I did end up with a respiratory virus which hung around for 4 days but only made me unwell for one. (I do of course realise I am extremely fortunate to be able to do what I do but often it isn't without out symptoms of severe IBS and migraines).

Its very early days but it is looking very promising. My sleep has also improved in its quality but not in the length of time I am asleep which is fairly short at around 6 1/2 hours a night. I also hadn't had a migraine for over a week until messing things up yesterday.

The thing that I threw me off was that I added in some DHEA having had a urine test which showed I was very low in this. I am steroid dependent so have to take a low dose of Prednisolone plus I have to take desiccated thyroid medication and a dash of oestrogen daily. The DHEA probably caused the stubborn migraine so it goes to show that for some of just sorting out our energy/immune system as the NAD+ theory goes won't be enough, we have to sort out our individual hormonal issues too for it to really work

Pam
 

xebex

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great news! I'm seeing similar improvement using niacin along with the other supps in the stack but not sure they are doing much, the niacin definitely is - what is the difference between niacin and NMN?
 

bertiedog

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I have just found some very depressing research (for me) which is another possible reason why I still have the stubborn migraine. Excess nicotinamide raises serotonin and HISTAMINE which for me is a real issue as I don't possess the enzymes to degrade it. The research paper also shows it can inhabit other parts of the methylation cycle.

Always feels like one step forward and then two backwards!

Here is the quote from the research article - "Compared with those before nicotinamide load, five-hour postload plasma serotonin and histamine levels significantly increased. These results suggest that excess nicotinamide can disturb monoamine-neurotransmitter metabolism."

Excess nicotinamide increases plasma serotonin and histamine levels
Yan-Jie Tian 1, Da Li, Qiang Ma, Xin-Yi Gu, Ming Guo, Yong-Zhi Lun, Wu-Ping Sun, Xin-Yuan Wang, Yu Cao, Shi-Sheng Zhou

PMID: 23426511
BTW They used 100 mg nicotinamide and I have been taking 150 mg.
Pam
 

xebex

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interesting, i tried a non-flushign type (inositol hexaniconitate) and it didn't do anything, so maybe it's super important that it's NMN rather than the other non-flushing types.

and yes I also read that Niacin messes with SAMe and histamine - yesterday I took it on an empty stomach and it triggered allergy symptoms, I don't regard the flush as an allergy infact I rather enjoy it! lol but it triggers sinus pressure. If I take it with food it's ok. So I have been taking SAME and b12 which helps with the methyl issues but unfortunately SAMe puts me in a constant state of hsv2 outbreak - can't win!
 

Wishful

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Excess nicotinamide raises serotonin and HISTAMINE which for me is a real issue as I don't possess the enzymes to degrade it.
This set off a picture in my head: someone taking a treatment for one symptom, and needing another treatment to counter the side-effects of the first treatment, but the second treatment causes side-effects which needs yet another treatment. Soon the person is taking dozens of treatments just to counter one symptom. At some point you have to reassess whether the first treatment is worth it ... and that's assuming that the first treatment didn't just stop working at some point, as so many ME treatments do.
 

bertiedog

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The past couple of days I have reduced the NMN to a approximately 1/4 of a capsule which I estimate to be around 75 mg and yet I still feel the benefit. Yesterday, still with a residue of headpain I had to go food shopping which is usually a quite an ordeal and where I end up with legs like head and often dizzy turns which sets my heart off.. I did take just 10 mg beta blocker before going there but I often do that anyway.. Luckily Asda is only a mile from my home so I can drive there is 5 minutes and also it was quite quiet.

I know where everything is and I take a shopping list with me and can be in and out in a bit less than 30 minutes. Yesterday was the best I have felt in there for years, and my legs weren't leaden in any way and actually I thought to myself is this what being normal feels like? Of course it didn't last and once indoors I still wanted to top up for around 15 minutes on my oxygen concentrator and was ok to get lunch 30 minutes later.

I had rested for an hour and a half roughly before going there but had also done small cleaning jobs earlier. Two and a half hours later after a very short nap of around 20 minutes, a friend came round and we took my dog around the park in gale force winds. My legs were strongly complaining after 15/20 minutes so I was pleased to sit down and chat and top up with a small amount of nuts and half an oatcake.

Once home I didn't even think of needing to use to my concentrator which hasn't happened previously after a walk and also using energy chatting to my friend for over 2 hours. Therefore I am going to continue with the NMN at the lower dose of 75 mg.

Pam
 

bertiedog

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I have just found some very depressing research (for me) which is another possible reason why I still have the stubborn migraine. Excess nicotinamide raises serotonin and HISTAMINE which for me is a real issue as I don't possess the enzymes to degrade it. The research paper also shows it can inhabit other parts of the methylation cycle.
After doing a bit more digging I have just found this from NAD site which I think may be run by a company that sells NR supplements (Nicotinamide Riboside or NR). Its a very interesting site for anybody interested, www.aboutnad.com

NICOTINAMIDE MONONUCLEOTIDE (NMN)
Nicotinamide mononucleotide is not a form of vitamin B3, however, it is an intermediate molecule made in the conversion of both nicotinamide and NR to NAD⁺ [21, 25]. It is a type of molecule called a nucleotide, which is very similar to the building blocks of DNA. As a nucleotide, any NMN consumed through the diet or supplementation must be converted to NR prior to entering the cell [10, 25-33]. Once in the cell, the NR is converted back to NMN and subsequently to NAD⁺ [21, 25, 27-29, 32-34]. NMN has not been clinically demonstrated to be safe or effective at boosting NAD⁺ in humans to date."

Note the last sentence which I haven't followed up yet.

So reading this maybe there shouldn't be a problem with certain essential nutrients like choline and betaine being used up by a dose of 100 mg nicotinamide as studies have shown. This can interfere with methylation. If this is the case then NMN wouldn't be involved in the degradation of the amines because its not a form of B3?

Don't know if anybody on PR has tried NR?

Pam
 

bertiedog

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Update

(posted this on another thread yesterday but thought I should post here too)

I have been taking the lower dose of 50-75 mg NMN for the past 14 days with an excellent effect still. I have a lot more sustained energy and only one migraine in 11 days which is unheard of for me. There is a possibility that the nasty daily migraines I started to get at the higher dose might have been caused by Quercertin and not the NMN but anyway I stopped for one day and had a slump in energy so restarted as the much lower dose. as recommended by another expert on it, J E Williams.

Also I have been watching several You Tube videos on NAD+ and its role in ageing, the immune system, DNA repair and lots more. This one is typical of what I mean but I haven't watched all of it yet. I am tempted to buy David Sinclair's book but not sure how technical it is. I find the NAD information absolutely fascinating and it keeps leading me to more and more other interesting topics like what SIRT genes do!


NMN is probably one of the most useful supplement I have taken in 20 years of ME but I should qualify that I am 73 years old and that might be the reason why I get so much benefit from it.

Pam
 
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Yes I have a slow functioning enzyme and I am also heterozygous for HNMT so you can see why histamine and all the other amines are a problem for me resulting in the bane of my life = migraine.

Pam
So you have both enzymes that are sluggish? I have major amine reaction problems but can't really trace it to slow metabolizing genes or genetic lack of enzymes. I'll check my HNMT to be sure. I think for mao-a i was heterozygous, but so was half the population, most of whom do not have the amine problem that i do
 

bertiedog

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So you have both enzymes that are sluggish?
Yes that is correct. I definitely have an amine issue because of the severe migraines I can get so easily and it is a known connection.

In 1998 an NHS Allergy Consultant tried to do skin tests for all the standard allergies but in fact he said he couldn't do this with me because my skin reacted to everything even the control! He said this was a sign of high histamine in my blood which he said was rare. He therefore followed up with a blood test which confirmed I was allergic to grasses,, dogs, cats, horses, and bed bugs!

At the time I was suffering with quite severe low cortisol/thyroid symptoms though not recognised medically at that time and since I went on low dose steroids plus thyroid meds in 2002 my allergies have hugely improved and I think there is a connection with cortisol and histamine but haven't looked it up for ages. I do try and eat a low histamine diet but I am not obsessive about this.

It might just be that cortisol is one of the main natural anti-inflammatories so that when I started to get sufficient things calmed down. What hasn't improved are the migraines which are probably connected to serotonin and the new CGRP theory but I have to be extrmely careful with my diet and rarely eat out because I have run into trouble so many times when eating in restaurants and being assured that there are no additives in the food only to develop severe dizziness, heart racing and a 48 hour migraine follows. When these symptoms start I know the food has got Monosodium Glutamate on it despite assurances to the contrary.

Pam
 
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Hey @bertiedog

I remember when we chatted about your oxygen concentrator and now look at you! You seem to be flying. So I assume the NMN is still doing you well?

Learner1 just mentioned it to me and I hadn't touched it (ever actually) because I was on Josh's protocol for 4 months. With massive baseline and symptom improvement I am now trying to squeeze a bit more out of my body so I can hopefully manage 1 hour walks, not there yet tho - but seemingly close.

Anyway would be relieved to know you're still getting a lot out of NMN, as it's next on my list to try, with one or two other things.

Thanks!
 

bertiedog

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I remember when we chatted about your oxygen concentrator and now look at you! You seem to be flying. So I assume the NMN is still doing you well?
Hi, well actually I have been struggling the past 2 weeks with my energy running out badly plus chronic migraines are back and to cap everything my left groin/thigh keeps giving severe pain. The last part has happened after being advised to do some very strong stretches to try and lengthen my calf muscles because they have shortened according to a musculoskeletal specialist. My left foot bends inwards because of OA but he seems to think this is throwing off my left thigh, hence the exercises but they have only ended up making things worse because I think he was ignoring the fact I have ME! I find this often happens if I go to see somebody who is fairly ignorant about ME and just reflects on what they would do with a more normal or average patient if you know what I mean.

Because of this issue with my leg it has affected my energy very badly plus the migraines so I stopped the NMN early this week but had been on it non-stop since June usually around 85 - 100 mg. I have stopped several supplements to see if they are causing the migraines not just the NMN. I still want to exercise but the energy is running out very quickly and then the pain starts up in my leg and have to stop. Looking at my Fitbit my number of steps each week varies between 64,000 - 73.000 each week. Obviously this week they are down but still at 61,000 with a day to go.

TBH because of the above I don't really know if the NMN has made a big difference or not. I do think it helped me to feel better and undoubtedly wouldn't have stopped it at all if it wasn't for the migraines. I also think it helped with better quality sleep but I only sleep around 6 1/2 hours a night anyway. Probably that will go up a bit now it is much darker.

Pam
 

godlovesatrier

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Thanks for the update. How useless of this physio! He seems to have definitely ignored your ME. I've had that happen too many times. Very frustrating.

Glutathione appears to have been the holy grail for me. I'm now sleeping 9 hours. I'm honestly stunned. Nothings really worked apart from nytol and that stuff is toxic.

Anyway back on topic. NMN is really very expensive here. TIME are the only brand I trust to buy it from in the UK. However I'll be getting some and taking the same dose as you and @Learner1 . Hopefully it helps.

Thanks so much for the update and I sincerely hope you're able to get back to baseline.

I don't seem to get any fatigue anymore. It's almost completely gone. Wish it was a one size fits all approach for everyone. Doubt what I take would help you. Really hope you recover from the exercises soon tho!