This my first post, so I want to be careful to jump the newbie hoops. I have lower body paraplegia from spinal nerve deterioration due to a rare AVM known as Foix Alajouenine Syndrome. I believe that all of you in this group suffer from nerve deterioration, so I am posting to “General”.
Note: I teach biology at CSU Sacramento, do a lot of medical information researching, and I don’t easily subscribe to unverified information, nor am I a purveyor of any product.
I started taking a vitamin K1 + K2 + MK7 & 4 supplement from the Big A vendor (trying to stay out of flagging trouble here - I will post the screenshot of it when I am allowed to). I have taken and still take a long list of supps and herbs (*see my take on these below, but first the main message).
The Vitamin K complex may be doing something big to me that is far beyond the effect of the score of other supps and herbal extracts I take or have taken to cope and strengthen. I don’t know exactly what it is about the VitKcomplex, but about 7 or 8 times now, the day after I take the one label-recommended capsule I feel a kind of healing tiredness - the kind of tiredness I get when something is being rebuilt. A good kind of tiredness in which my appetite for nutritious food is substantially better. Not the kind of chronic fatigue tired (which I was diagnosed with early in the onset of this), in which you get appetite only for junk food. I sleep a lot on these day-after-the-capsule days. Then I wait 2-3 days, the tiredness goes away, I exercise and work, and then I take another capsule, and the same thing happens.
In the interim days I between the good-tired days I feel good and exercise. My gait is definitely getting stronger (I can walk a couple hundred yards a day) but it’s still early to say whether it is definitely the Vit K because I try so many other things, see below (also, I’m a scientist).
So here is a quote and a link to a peer-review scientific journal article about Vitamin K/M complex and neurological conditions.
From the journal Advances in Nutrition (my bold font on some):
"Research conducted in more recent decades has generated data that confirm the relevance of vitamin K in the nervous system and cognition. Notably, a strong relationship has been established between the K vitamers and sphingolipids in the brain and their modulation by nutritional status. Important findings have also been obtained with respect to the cell signaling actions of protein Gas6 in both the central and peripheral nervous systems. New knowledge has been gained about menaquinone-4 (MK-4), the principal K vitamer in brain, which could have far-reaching effects in the brain and other components of the nervous system. Finally, a limited number of studies have provided evidence of a relationship between vitamin K status, behavior, and cognition. (Trying to insert an image of the article here.)
The list of my supplements botanicals, mushrooms etc. is too long to put in this first post. However, I do believe in looking at and using ancient traditions such as Chinese medicine, along with evidence that no harm has been found (WebMD etc.).
Thank you for sharing . When I was taking vit k and eating a lot of greens ( vit k) I did feel body wise great,
I will say my body is not normal at all but I had no idea vit k is a blood clotter and my drs ( all heads of their Dept at Stanford ) believe that my body holds onto it dangerously. So I actually can’t take it and hardly eat it even though I love most greens and even licorice has vit k.
I did get 5 blood clots in my brain and had a rare CVST stroke. It kinda felt like a sinus infection on my brain but I just thought my migraines were changing and never mentioned it to anyone.
Interesting. Afaik, Vitamin K is good for bone health and the regulation of calcium levels in the body, in some case it even de-calcium in your veins, it’s also an anti-blood thinner. Studies on nerve health are limited but if it works for you then congratz.
Also, is your AVM treated? Vascular embolization or gamma knife? How long it has been?
Hi Don, It’s obvious you’re a scientist. Wow! I’ve been mostly interested in CBD/THC lately as treatment for epilepsy. There’s starting to be scientific studies that show it can help. Do you know anything about that ? I’ve been on the AVM/seizures/meds treadmill for a very long time and I realize we know very little about the human brain much less how to treat/control it. You bring me hope that people like you will continue to experiment and be open-minded and not defer to the same old tropes. and Western arrogance.
As far as vitamins and minerals, isn’t it possible to get too much or too little? I started taking vitamin B and read you can take too much. Personally, I’d rather get whatever vitamins/nutrients I can from natural foods, not pills, if possible. You pointed out something I know from personal experience-- the quality of sleep matters a lot. Keep us posted on your ideas/findings please. Best, Greg
Seiko - Thanks for the note and the usual WebMD info about vitamin K (no criticism here, I appreciate your post). My original post didn’t have [this peer-reviewed source].(Vitamin K and the Nervous System: An Overview of its Actions - PMC) - (didn’t have time, now I do).
I have been to six neurologists, three at Univ. California medical, None have ever mentioned vitamin K, or embolization or gamma whatever. I have Foix-Alajouanine Syndrome.
If anyone reads this who has tried vitamin K, please post here your experience.
Best regards,
Don
Greg - Good to read your post. Re: your questions - (I’m not an MD so these are just my experience and opinions):
Re: epilepsy. My ex-wife and good friend has epilepsy and was taking CBD. She said it worked, but I think many of these things are not sustainable over the long-term, unless adequate periods of non-use are part of the regimen.
Re: taking too much of anything - yes, definitely that’s not only possible but very common. I for one am one of those who is/am sensitive to certain herbs, vits, and supps. In a Reddit discussion of herbalists I posted this, and a TCM (Chinese Trad. Med) practitioner said that I have something they call “excess”. I have almost completely stopped herbs like ashwaghanda, reishi, ginseng, supps like NAC, and alpha-lipoic acid that are often recommended.
However, vitamin K really did something. The first time I took one I slept the entire next day - a healing type of sleep, the kind you get when healing from something. Same thing 3 days later, and again and again. My energy the day after the sleep days began to increase subsantlially. Nearly doubled. Now I’m able to take a Vit K ( K complex with M4&M7, be sure to read prior posts) every day.
See the article I posted in response to Seiko.
Good luck - hang in there. I’m still on my feet, but barely.
Don
Hi Angela, Thanks for taking the time to forward the info on EBM. I’m going to check it out. I broke my back in a seizure related accident in August. So maybe this stuff can also help that. My son rescued 2 street cats, Mogley and Q in Manila, Phillipines. He’s in love with them and has literally flown them around the world with him. He’s encouraging me to get cats. I’m in Phoenix (sizzling). What do you think? I read your “war stories” and you’re certainly a tough lady just to survive with your spirits intact. Be well, Greg
@DonLot is there a K complex that you recommend, or brand that is better? I look at all of them listed on the BigA, and it’s overwhelming. I don’t know what the posting guidelines are here, but feel free to pm me if need be.
Thank you for the quick reply! I’ve done some reading up (I’m research library trained… can’t break old habits, and I read up on every thing), and am already on a hodgepodge of vitamins/minerals, but the research on this looks great. I’ll be adding it to my regiment.
Hi @GregF I have spent quite a bit of time in your town between working for Schwab, loving Baseball and my husband worked for Vanguard before my stroke.
After my moms spinal surgery here at Stanford she said the marijuana gummies I got her were working better then the pain pills and I also got her some for sleep which she still both uses, which don’t give you the high feeling. There are so many products to try as well.
When I actually met with a dr who I didn’t know at first until she was asking so many brain questions, that she was a neurologist regarding a medical card before it was legal to everyone. She told me I was just going to just a bunch of different things to see what works.
I first tried a pill that they told me would not make me high but it gave a vertigo like feeling that I of course I didn’t like. Then I tried smoking it which I couldn’t seem to inhale ( never been a smoker) . I find the gummies, salve, tinctures work best for me.
I personally think cats are great and I even have worked with a shelter in Phoenix that I have made toys then I have donated half the proceeds to
It’s All Animals Rescue
I believe they are adopting out of Petco in Metro
If you mention KokoCatnipBakery they might know us
@GregF Also I forgot to mention that you can foster first to see if it works out . They always need fosters.
Not sure if they have any FIV cats but there is much bad info about them and they can lead a long life .
One shelter I was on the board and ab active volunteer we were part of a UC DAVis study to prove that they could live a long life. I swear they are all super sweet cats. Many shelters will let you foster them to insure that if there are medical issues that they take care of them. The issues most people see is dental which can be expensive esp like where we live.
Cats don’t like their water where their food is like lions and tigers it’s innate in them.
Always have fresh water for them in multiple places.
Let’s us know how it goes with either the CBD products and the cats
Hugs
Angela
