My name is Laura, currently 53 ( diagnosed Parkinson’s at 45). My major symptoms are gait and balance issues, along with difficulty of movement. Recently I have learned that vitamin K2 may help Parkinson’s, I started taking MK4, since 98% of vitamin k in the brain are MK4. My experience is mixed.
On the positive side, my right food is relaxed, this is the first time ever since I got Parkinson’s. I now can sleep with my relaxing food, what a bless! Also I noticed I can raise my arm a little, sometimes even to reach upper cabinet. It also cured my long time hip pain. I used to get steroids shot every few months, the pain was gone after few weeks of taking K2.
On the negative side, I noticed my legs seem to be weaker, and more dragging.......
I started at 100 mcg a day at beginning, then increased to 200 mcg, 300 mcg, started noticing these side effects plus sign of anxiety, so I reduced it to 60 mcg a day now, with 1000 IU of vitamin D. This vitamin K2 is definitely doing something on my Parkinson’s symptoms, the first few days of taking it, I was doing so great, even thought I was going to recover. Is anyone taking K2 here? I remember I’ve see someone here mentioned it helping with gait and balance.
Thanks for your reply! Laura
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LauraYu
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Vitamin K is essential for bone health and cardiovascular health, because it is a necessary component of the enymatic machinery that gets calcium out of the bloodstream into the bones. There is some uncertainty in the literature whether it is K1 or K2 that really counts. I take a combo with both versions of K2 - MK4 and MK7, plus K1. I have been taking it since long before Parkinson's so I cannot report on its effect there.
Other necessary components of this machinery are vitamin D, silica and boron. I have also noticed that glucosamine condroitin makes a difference.
I wrote about these matters here:
Vitamins and Minerals for Bone Health and Reduced Risk of Cancer
Details of the vitamins and minerals that improve bone strength, reduce fracture risk, prevent hardening of the arteries, improve cardiovascular outcomes, and reduce cancer risk.
What You Need to Know to Reduce Risk of Hip Fracture and Cardiovascular Disease
Thank you park_bear for replying to me and sharing your knowledge! Yesterday after taking just 30 mcg of MK4, I became so weak, couldn’t even stand up. This morning I added 30 mcg of MK7, so both MK4 and MK7 total 60 mcg. It seemed to make difference already. I can raise up from a chair and legs tremor improved. Not too sure if it’s just a coincidence or not. I will see what happens in next few days. My body is so sensitive now, up to the point that I react immediately to tiny vitamin.
Once again thank you for your note! It is a life saver for me this morning 😄Laura
That's too bad. It does that to me too so I keep cutting the dose. It really improves my balance, gait and the ability to get up from bed and a chair. Why not try playing around with smaller doses, skipping days, once weekly etc
What dose are you taking? Maybe I should think about it again. I am scared now, few days ago I took a multivitamin gummy with 2000 IU of vitamin A. I ended up almost disabled, couldn’t even go to washroom by myself. I am so desperate, feeling the disease is really trying to completely disable me🥲🥲🥲
I know how you feel !! Wow, I wonder what was in that gummy ? Do you have any food allergies ? I am taking 125 mg thiamine HCL 2X DAILY, but that's way too much for you. Try 25 mg B1 every other day to see what happens and how you feel. Re post/ edit your last post under a different heading like Desperate, or Supplements make me worse...maybe it will get the attention of people who know a lot more than I do. I guess your MD isn't much help ??
I actually don’t have any food allergy. My body suddenly became this sensitive. If I take vitamin D, even 400 IU, It basically will kill me to the point that I almost lose bladder control. I ordered some B1 today, want to give it another try. Can’t sit properly, can’t stand because of losing balance, can’t lay down because of shaking....... every single minute is so hard to pass. After I got Parkinson’s, I really started to understand what “ desperate “ means
I am currently taking Zandopa with some Sinemet 4 times a day, 3 times during the day and one time before sleep, so I can have roughly 4 hours of sleep. The medicine can only last for about 2-2:30 hours, and the rest of time is up to my own struggles 😓I am in Canada, my neurologist suggested to add some Pramipexole, I am a little worried. I used Neupro patch before, seating, anxiety, shopping urge.......I am thinking of Azilect now
I think you have signs of underdosing particularly the weakness you experience. Azilect or entacopone are good choices as well as increasing your levadopa
I have been taking Vit K for the past few weeks as I keep freezing and falling when playing tennis. The last 3 times I played (after a week of Vit k) I did pretty well - stayed on my feet and only occasionally froze.I also moved my pramipexole to the evening as my falling got a lot worse around the same time I started that. Conincide perhaps.
I also cannot take the B1 high dose as it makes me very twitchy and anxious.
Sorry for the late reply! I also had a couple of weeks improvement with vitamin K2, I can raise my arms to reach upper cabinets, my balance improved, my hands were more flexible, etc. I even thought I might recover 😊but I started to have issues after that, more like anxiety kind of feeling, my body holds tight, having hard time raise my legs.
I started my 3rd round trying vitamin B1 now, from 25 mg up to 150 mg now, still adjusting. Eventually I think I will come back to K2 again, I personally feel somehow calcium related factors do impact my symptoms, vitamin D makes it worse, calcium, phosphorus, vitamin K2....., my body doesn’t seem to be able to maintain a proper balance.
Be careful with B1 as too much/little can give you that anxiety feeling, just right relaxes tensIon , improves energy. I just spent 2 weeks adjusting my B1 to the point where I was miserable. I had stopped for a day, or two, and resumed at a higher dose because I decided to test the waters...I am back to 125mg 2x day, or 250 1x a day.
Yes, my past couple of b1 rounds started at 100 mg, and that within an hour caused anxiety. However I found that when I took Now brand b50 twice a day, it didn’t cause anxiety. This is equivalent to 100 mg of B1. So I am currently taking 150 mg b1, electrolyte power, and B50 complex. With this package, I sleep well, and the episodes of whole body shaking while I am sleeping stopped. But my left arm, which is my good arm, seems to have a bit of resting tremor now . I am still observing, it’s just been 5 days since I started 150 mg B1, probably too early to conclude.
The only problem of taking b50 is the b6 component interacting with Zandopa . I do notice my on- time has been shortened. I found a chewable B Complex that only has 5 mg of B1 to B6, I am testing now, not sure if this tiny dosage is going to be enough.
Let’s pray for both of us to have a successful B 1 journey 🙏🙏🙏I read those successful B1 stories, I smile for them, happy for them, admire them, and to be honest, I am a bit jealous 😂😂😂let’s hope we will become one of them 😄😄😄
So in all you're taking 150 mg of B1 ? 50 + 50 from the NOW BCOMPLEX plus your own extra 50 MG B1 ? If OD on B1 the same thing happens almost IMMEDIATELY..shaking and anxiety intensify.
Are you taking magnesium a few times a week ? Dr C recommended it along with the B1.
The electrolyte power has magnesium/ potassium etc. it’s full spectrum electrolytes. For B1, I am juggling between b complex and B1 pill to make sure my total intake is 150 mg. I do feel shakier these days, maybe I should lower B1 to 125 mg. I will see. I will let you know, also please let me know how you’re doing with your B1 adventure.
Alas the Vit K has failed to keep me upright and I fell twice at tennis on Saturday. I will try some electrolytes and a little Vit B next. I also wonder if drinking milk is a problem as I’ve had a bit lately when I can’t sleep.
I’ve been drinking milk my whole life until recently, I discovered that My balance is worse after the morning glass of milk. I stopped the milk and all dairy products. I replaced it with almond milk
I am still losing balance, but managed no fall. I am still taking k2, 50 mg a day, still helps my balance, but I found too much makes me weak. I also added vitamin A(1600 IU a day) and iodine to my package. The iodine was to my surprise, I feel calm and less stiff after taking it.
We have to keep trying new things, as part of the journey
Hi Laura Yu, my name is Jean, wife of Sloboy. He’s been taking K2 with D3 for quite awhile. He’s had Parkinson’s for many years and has DBS I in Dec. 2010 . That makes it more difficult for me now to judge what DBS controls with settings but he has lost hair and balance now over the years. We take the K2 for directing calcium to the bones. I haven’t heard that but like that. Keep it up if you have results. Love this web site! Gives hope. Jean
Thank you Jean for your reply. I have heard that people lose balance after DBS. My balance was bad from the very beginning of PD, I somehow feel it’s calcium related, I.e. the calcium balance in blood, in cell, in bone…….. I am still taking k2, it still helps, and I added just 1600 IU of vitamin A and some iodine to my daily supplements, I found they help with my stiffness. Good luck to Sloboy!
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