I didn't know my levels because I wasn't tested until about a month after I stopped B6, and honestly I don't recall that number as being impressive. I think they are supposed to protect the sample from light, and they didn't do that, so I don't even know if the value they got was real. Did my symptoms get worse before better? I'd say yes, although mostly they just got very different. Things went from numb to shocking and painful at times. It's like asking what happens when your arm "falls asleep" and then wakes up - it's better because it's not numb, but feels awful. It looked in the literature like the symptoms vary depending very much on the dose you were taking. The people who were given enormous amounts due to mushroom poisoning (it was a therapeutic attempt at the time) ended up with real trouble walking, if they could at all. I never had any real trouble walking, but I was taking 50mg per day. I think the symptoms are actually different (not just more or less of the same) depending on your dose and probably your sensitivity.
One other person commented on hypothyroidism contributing to B6 toxicity because it could hamper your ability to clean B6 from your bloodstream, and that makes a lot of sense. Dunno if it's true, but it sure seems logical. ;-)
It has been over 6 mos since being diagnosed with B6 Toxicity. My level was over
90 when the limit was 23. We calculated that I probably had this condition for two years without knowing it. I still suffer with heart palpitations and much body pain.
In addition to this my sleep is not good either especially with the vivid dreams
I have. This all leads to more anxiety which is the reason my doctor put me on
B6 to begin with. Naturally, I am losing confidence in getting well.
If you have experienced these symptoms:
Chest pain with palpitations. Had medical test for heart they were negative.f
Body pain including lower back pain.
Very difficult sleep.
Could you put up a post to give some comfort if you know what I am talking about.
Lastly, a lot of my burning and tingling pain has diminished greatly. This is nice
since my calf would burn like it had a torch on it...
Just read your post. I trust you have stopped taking any B6 supplements. You must if you plan to get better. I had the heart palipatations but no chest pain. I did have lower back pain but I have scoliosis. The pain is better now. I also have difficulty sleeping and I must take an anxiety medication along with melatonin to help with sleep.
You are not alone. This is a rare phenomenon and only a few drs believe it actually exists.
The important thing is to stop all B6 supplements. I have been advised to take acetyl L carnitine with alpha lipoic acid and methyl b12 as well as fish oil with DHA.
You will be fine. The healing process is slow and erratic. Go back and read my posts as well as the others. And let us know how you are doing.....
ALL OF IT SOUNDS FAMILIAR!
EVERYBIT OF IT!
Now, I had HEART PALPATIONS too. Please check with your doctor, if you want to, about taking some extra magnesium. I think you had told me you were taking it...I am sorry I can not remember. THIS HELPS ME DRAMATICALLY with palpations! Get back to me on this...
I had CHEST PAINS too. I sometimes thought it was my heart, because it was on my left side, but just waited it out, and it finally went away. It started with small cramping or squeezing, then got stronger little by little. Finally, it started disappearing, then went away. In reality it was no different then any other of the cramping I suffered with, but it was in the left chest, so SCARY! I remember walking to pick my daughter up from school. As I am walking, my friend is picking her child up, and I kept grabbing my chest, because it was cramping or squeezing. She offered to drive me, I said, don't worry, it is the b6 detox, it is something I have UNFORTUNATELY gotten used to. Well thank goodness, I don't have it anymore!
At this point in time, your difficulty sleeping may just be the whole detox process. Frankly it is OVERWHELMING and UNCOMFORTABLE!
BODY PAIN was EVERYWHERE! ESPECIALLY in my LOWER BACK. My lower back was my weak point before, so it makes sense, that it was attacked the most! I have scoliosis and stenosis, so I have weak areas, and the were attacked. But I did have times when my WHOLE BODY was SQUEEZED/CRAMPED at once. NUTS!
Over 6 months, since totally eliminating b6, no supps, no supp.foods, basically no artificial b6, correct? I was still awful at 6 months. I have just started feeling normal at 8-9 months. I actually have days now where I experience few symptoms. But it definitely was over 6 months.
I know it is hard, but I am personally giving myself 1 year to feel in the realm of NORMAL! Forget that 6 months thing. CRAP!
What exactly do you take now? VITS, SUPPS, MEDS?????
I really appreciate the time you took to type a detail message the way you did. Thank you
very much. I have it exactly as you wrote it about the symptoms. The questions we all have
to ask ourselves is why did we start taking B6 to began with? And, why didn't we metabolize
the B6 like most other people can? I think it might have something to do with methylation. Maybe we are not methylating our B vitamins especially B6?
My burning and tingling have pretty much stopped almost. I feel confident that this will stop.
What scares me the most are the palpitations with dizziness. Sometimes my blood pressure seems a little high and than it goes back to normal or even low. I am taking magnesium with zinc too. I have a good diet I think. The pain in my body is incredible. It is like a body cast sometimes. Then, mysteriously it just goes away. My doctor who is a ND wants me to take a Whole Food B complex vitamin which is already methylated?
I really don't know what to do. I have a lot of pain chest and lower back pain. My
eyes get blurry at times. Sleeping is very difficult.
So, there must be reason we all started taking B6? For each of us it will be different, but for some reason we believed we needed B6. In the end we are trying to recover from B6
while trying to find the root cause of thinking we needed it to begin with.
I am scared that I will never have a life again. To me, living is when you don't worry about
your health. Lastly, what makes us think that taking anything that isn't whole food can help us since we thought B6 was going to help and it hurt....
Again, thank you for taking time to answer this post. If you could address the symptoms again while giving hope since it seems you are making progress. My B6 level is normal now, but it was really high before that I was lucky to measure. My doctor still feels my body should have handled the B6 I was taking. Forgot this, I also see eye floaters which are really annoying. Will try not complain after this post. Thank you.
This is what I meant by a methylator which is whole food. If you have enough of this changes are you can detox faster and use B vitamins better.
Eggs' Choline Reduces Inflammation
People whose diets supplied the highest average intake of choline (found in egg yolk and soybeans), and its metabolite betaine (found naturally in vegetables such as beets and spinach), have levels of inflammatory markers at least 20% lower than subjects with the lowest average intakes, report Greek researchers in the American Journal of Clinical Nutrition (Detopoulou P, Panagiotakos DB, et al.)
Compared to those whose diets contained 310 mg of choline daily had, on average:
22% lower concentrations of C-reactive protein
26% lower concentrations of interleukin-6
6% lower concentrations of tumor necrosis factor alpha
Compared to those consuming 360 mg per day of betaine had, on average:
10% lower concentrations of homocysteine
19% lower concentrations of C-reactive protein
12% lower concentrations of tumor necrosis factor alpha
Each of these markers of chronic inflammation has been linked to a wide range of conditions including heart disease, osteoporosis, cognitive decline and Alzheimer's, and type-2 diabetes.
In an accompanying editorial in the American Journal of Clinical Nutrition entitled, "Is there a new component of the Mediterranean diet that reduces inflammation?," Steven Zeisel from the University of North Carolina at Chapel Hill noted that choline and betaine work together in the cellular process of methylation, which is not only responsible for the removal of homocysteine, but is involved in turning off the promoter regions of genes involved in inflammation.
"Exposure to oxidative stress is a potent trigger for inflammation. Betaine is formed from choline within the mitochondria , and this oxidation contributes to mitochondrial redox status ," Zeisel continued.
"If the association between choline and betaine and inflammation can be confirmed in studies of other populations, an interesting new dietary approach may be available for reducing chronic diseases associated with inflammation," he concluded.
Recommended daily intakes of choline were set in 1998 at 550 milligrams per day for men and 425 milligrams a day for women. No RDI has been set for betaine, which, since it is a metabolite of choline, is not considered an essential nutrient.
Practical Tip: Egg yolks are the richest source of choline, followed by soybeans. Spinach, beets and whole wheat products are primary sources of betaine. (Olthof MR, van Vliet T, et al. J Nutr)
Okay still complaining....
Did you get dizzy and feel nauseous at times?
I checked my pulse and it is slightly elevated. My normal resting pulse is 63. I was sitting
and took my pulse and it was 78. Not a lot, yet for me I feel it. My BP was 123/72, I was out
washing the car in the heat wave with my wife. After washing I felt dizzy and ill.
This is an organize list of symptoms:
Burning Calf muscles 2
Tingling Feet 2
Dizziness today 4
Racing pulse 4
Body pain 3
Lower Back Pain 5
Blurred Vision 3
Ringing Ears 3
Have had other symptoms. These are the ones today.
Tzennifer are you healing and getting better slowly?
Does it happen?
Thanks for listening and as always responding.
If I was approach by an ND to take a vit with b6, I would not do it.
I would get a privately compounded vitamin based on blood test results of what my body needed, and get the b6 through diet. But in the end it is a personal choice.
DOES ANYONE ELSE HERE HAVE AN OPINION ON THIS????
This is an organize list of symptoms:
Burning Calf muscles 2 Burning, do you mean nerves?
Tingling Feet 2 Of course! Almost gone, replaced by cramps and shocks!
Dizziness today 4 Yes, but rarely.
Racing pulse 4 Absolutely, came, went, came u get the idea...now mostly gone. My palpations return if I do not take my mag.
Body pain 3 FULL body squeezing...still have pain throughout the body, but MUCH MORE MANAGABLE! I think that will be with me for a while.
Lower Back Pain 5 ABSOLUTELY! Still do, comes and goes - LIKE ALL THE SYMPTOMS! THE CHANGE IS THEY SLOWLY BECOME WEAKER, AND THERE ARE MORE CALMER AND NO SYMPTOMS DAYS.
Blurred Vision 3 NO, but streaks of light and floaties in my left eye. One real bad, solid, gray fleck. Got progressively worse, now disappearing.
Ringing Ears 3 Yes.
Sleep 7 ABSOLUTELY sleep issues. Still have it, but I think it is stress related!
Have had other symptoms. These are the ones today.
Tzennifer are you healing and getting better slowly? YES
Does it happen? IT BETTER!
Thanks for listening and as always responding.
Yes, I have had heart palipatations, but they are getting better. It is worse in the heat.
However, I don't have some of the symptoms you and Tzennifer have as far as abdominal pain, back pain, blurred vision, burning calves.
My worst is oral/facial/head pain, even ear discomfort, but no ringing in the ears.
My tongue burns like HELL all the time. The nerves in all of my teeth STING, as well as the roof of my mouth and gums and jaw areas. A little facial numbness.
My hands and feet have some tingling, prickling and numbness, even burning sensations at times. Body aches: arms and upper back and headaches that do not go away for days at a time. I can handle everything pretty well except the oral pain. It is my WORST symptom. I have run across many other sufferers with this problem. But we are all different and you may have extreme pain in an area where I have no pain at all. That is what makes this condition so bizarre.
To Tzennifer: what foods do you snack on when you get hungry? Crackers, chips? I ate at a Chinese restaurant on Sunday and have been miserable since then. My pain has elevated me to the point of tears and I have had a severe headache for two days now. Since most foods have B6, what can we eat that won't cause a horrible, painful relapse?
Also, anyone out there with strange sensations in the ears beside ringing of ears? My ears hurt and feel somewhat uncomfortable. Let me know.......
Thank you and hope everyone will be feeling better soon!!!!!
Chinese food at most restaurants is not the healthiest. Probably very inflammatory in nature. So i am not surprised. The good ones tend to be tooooo expensive. We have an issue that I believe that can not take too much inflammatory things.
Snack - fruit, nuts, yogurt, cereal (unsupp!). And with the summer heat... icecream!
STAY AWAY from CRACKERS and CHIPS! POISON! MANY FILLEDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDD with BAD b6 that will set you back. I did that, and felt miserable. I HAD ONLY 5 CHIPS! 5! I was sick for at least a week, on top of what I already was suffering from!
I think you have to go on a diet. Only fresh stuff. I do not say organic because it can sometimes be tooo expensive, but not fried, supp, fatty. Like you are on a good food diet! Of course, I have dessert too, but not everyday.
I got, and still do, get terrible sensations in my ears. I refer to them as ear cramps. I still have them, but they are better.
STAY AWAY FROM NEG. INFLAMMATORY FOODS.
I know it is hard, American is filled with this horrible stuff, EVERYWHERE.
It tastes so good, buy NOT TOOOOOO GOOD FOR US!
Are fruits and yogurt inflammatory? Or were you saying, those were okay............ I am still not sure what to eat as far as snacks, is popcorn okay? Fruits, nuts? What did you eat for breakfast, lunch and dinner? Could you provide a short list of "safe foods"?
My ears feel weird even numb and my head feels alot of pressure and like it is on fire!!
Today has been absolutely horrible. Awful oral pain, stinging and burning...I am going out of my mind, when will this torture end!!!! Did you get that way too?? Can't do much of anything except stay in bed and check emails once in a while. HELP!!!! I still have difficulty walking and symptoms seem to intensify after I get out of bed after I have been lying down a while. Nothing eases the pain at all. But I know I have to watch what to eat, I just don't know what foods are safe.
Thanks, and I hope you are getting better everyday. :-)
There is a point when this get sooooooooooooo intense.
I am sorry you are suffering.
I suffered differrently - not the HEAD and MOUTH as much - SO IF ANYONE IS HERE THAT SUFFERED SIMILAR TO SUSAN, PLEASE RESPOND.
I know there are readers also that found sites with FOOD LISTS. I don't have access to that right now. CAN SOMEONE FORWARD IT TO SUSAN. Susan I don't think the food I ate made a real difference. I am talking about natural type foods. SUPPLEMENTED FOODS made me SICKER!
For anti-inflammatory foods they are listed many places on the NET, too.
I had a book, but I don't have access to that either. I AM SO SORRY.
PERHAPS ALL THIS NEW TORTURE is a good sign. Your nerves are WAKING UP A LOT! This happened to me, on others places of my body. It was UNCOMFORTABLE TO SAY THE LEAST, and WEIRD!
HANG IN THERE!!!!!!
IF YOU ARE IN A PANIC, did you FIND A PHYSICIAN/MD/ND YOU CAN TRUST?
Are you still taking the FISH OIL? And the at AMINO ACID Weil recommended? Check with the ND on CoQ10, Vit D (if your not in the sun). Perhas ask him for non-inflammatory, cell regeneration support.
Remember that one I sent out, a while back, you may have to back track...created by that (I think) German Dr., perhaps you need to look into that.
But I must tell you, it is TORTURE before it is better.
So, please don't panic, hang in there.
I don't drink cow's milk, I drink goat's milk. I don't eat cow yogurt, I eat goat yogurt or kefir. KEFIR IS VERY GOOD HEALTHY STUFF! I do eat nuts, raw nuts. I eat raw veggies, and steamed veggies. I eat lean meat. Limit the white stuff, be careful of the night shade veggies...BUT THIS IS A PERSONAL CHOICE. I think I suffered no matter what I ate, BUT I DID SUFFER MORE WITH SUPP. FOODS, CHIPS...you know, unhealthy foods, that somehow, I do not know, had b6 in them.
THIS IS NOT HELPFUL IS IT.
SO SORRY. Remember, you adjusted you calendar, because you took b6 again. Heimen is showing some definitive changes now, and I think he is already at 6 months, or very close, or just pasted. So 6 months to me is not appropriate calendar to follow. Got to aim for 1 year, to have any sense of positive change. SO DO NOT PANIC, hang in there!
EVERYONE CHIP IN - write to Susan. THANKS.
Hi Jen and THANK YOU for writing back and clearing things up for me. When I hear that the pain is a GOOD sign that things are improving, then since I ALREADY had pain, what is that? Or does the pain change? Just wondering.....
As far as the foods are concerned, I eat berries and greek yogurt for breakfast everyday and drink orgainic cow's milk. I would think eating raw veggies would be worse. I read that B6 is cooked out of foods.
No, I haven't found a Naturopath. I wrote to one that I found, but never heard back. I just read the posts here and use what I can, but the foods are confusing and so are my horrific symptoms.
Did you have unexplained muscles aches? I feel lke my body has aged twenty years. The symptoms are like those of fibromyalgia but I don't have that, but and intense aching in hands, arms, legs and feet? Does anyone have that?
Good to hear from you Jen and thank you for your kindness and support. I would love to hear from anyone who has had similar symptoms and how you got through those difficult days.
Many blessings and have a great day :-)
My pain and symptoms changed in type, but were continuous! it as though the were becoming more advanced. from the simple pins/needle foot, to the eventually total body pain.
Yes, unexplained body aches. total body squeezing, nerve pain, twitching...etc! My worst is from my lower back down!
Anyway all normal.
It just I did not have the INTENSE head (upper) issues you are having. I had it, but not like you. But all our bodies are different.
Hang in there.
Someone here asked why people take B6. For those of use who suffer from anxiety or depression, B6 can be a very helpful supplement, as it's essential to the manufacture of GABA and serotonin. A problem can arise with any supplement, any food, any medication, because we are all individuals, but one aggravating factor is people taking unbalanced supplements or foods. B6 is in a close synergy with B12 and folate; if B12 or folate is too low, therefore, B6 levels if you're supplement with it alone can rise to very high levels. This can happen in vegetarians especially, since they're diet is very low or deficient in B12. Another problem with people who take a lot of supplements is B6 is added to so many of them, and it can pile up. One has to be very careful about this. You think you're just taking 5-HTP, for example, and don't realize there's also B6 in it. Or you take a relaxation remedy, and don't notice the B6. And then it's in your multi, and it B complex, and in your food, and some people just overdose. I don't know why some do and most don't -- for most people, excess B vitamins other than B12 just wash right out of the body in the urine. It's what makes urine yellow, excess B vitamins washing down the toilet. But food can be unbalanced as well. Dairy, for example, while high in calcium is quite deficient in magnesium. People who fall for the advertising of eating lots of dairy for strong bones are therefore producing weak bones, because magnesium is just as important as the calcium but the calcium is leaching the magnesium out of the body unabsorbed. As for the question of inflammatory foods, that depends on the person. Dairy and wheat are the most common, but any food a person is allergic to or has an intolerance will produce inflammation. Soy is a common allergen, so if you're allergic to it, it'll produce inflammation. Corn is also high on the list of common allergens. And these foods, particularly dairy, soy and corn, are hidden in so many foods that people with problems with these foods don't even know they're eating them.
Now a question -- has anyone tried taking B12 and folate to leach out excess B6? These three combine to control homocysteine, and are in balance with one another in a healthy body, but if one has too much B6 it might make some sense to try taking folate and B12 to leach it out. Has this been tried?
I learned a lot because of jadeluca's post about methylation. I looked up "methylation" and found several links online. This link was very helpful:
It said that many people have too many or too few enzymes in their bodies and so not everyone metabolizes foods or things in the same way. This might explain why so many of us here discussing this topic have thyroid issues. The article also discussed histamine levels. I know I, personally, have way too many histamines and that's why I have so many allergies. I wonder if all of these things are related. Perhaps my body is lacking something that digests vitamin B6. I have mentioned here before that taking digestive enzymes with each meal has helped reduce my B6 toxicity pain each time I eat something with B6 in it.
jadeluca, I too have many floaters in my eyes, specifically my right eye. I am not sure if that's related to my B6 toxicity or not. I know I had some before I ever took B6 supplements.
Paxiled, someone on this list (many posts ago) suggested taking B12 and folate. I tried that and did not find that the B12 did anything helpful, nor did it seem to harm me. The folate/B9 actually increasted my B6 pain, though.
I'm going to go ahead and create a MedHelp Group about Vitamin B6 Toxicity. There, we will list our symptoms and what things seem to have helped.
It's not a question of having too many histamines. The body produces them as part of a normal immune system response to a perceived harm. What happens in people with allergies is their immune systems are overactive and the body for whatever reason induces an immune system response to things that aren't in fact harmful to it. Think of it as sort of akin to an auto-immune disorder, also due to an overactive immune system. My own opinion is that this is caused by the huge amount of toxins we are subjected to every day now in our industrial age, and the immune system just gets tired and attacks everything.
What you have described is what I previously thought about allergies and histamines. It's probably the correct description. My new understanding, based upon the website that I mentioned, enzymestuff, was different. But there was so much information there, all in medical jargon, that it's very likely that I misunderstood.
Hi all of you, I am now over my 6 month. HAPPY, but I still have problems. My cushionfoo is changing, sometimes gone, sometimes back. My muscles are painfull, the numb parts on my toes also!!! Sometime it feels good, but in the morning, there is again numbness. My theet begin to tingle and there is pain in alle af them, every morning afte waking up, and aboiut three o clock in the afternoon. Then also starts the electricity ans pain in the feet and legs, and mostly within an hour my mood swings into sadness and some depressed feelings. Stitches in the face, gebhind the eyes and sometimes in the throat. Not for days happily, for a few hours, but I is not nice. Now I feel also pain and some cramping in my arms, which I thought they were not affected. All my feet muscles are cramping and the toes are curling contstantly. The extreme weakness I felt in the past months, seems to have been dissapaered or at least is lesser and lesser.
I don't use any multi anymore, what doctor try to say, I learned my lesson.
I had very bad and awfull nightmares, dreaming stories in wich I was the actor of death. Horrible, very vivid.
They are gone, sleep is (mostly) good. My awfull heartbeating (hope you understand my bad englisch) is mostly gone!! Sometimes in the morning I feel extra heartactivity.
It will stop!!!
This week, for the first time, I was able to run.
So keep the faith!! Tzennifer was of great help for me, sharing her experiences.
Thank you so much for you message today. And, you are right Tzennifer is wonderful. Thank you too Tzennifer.
I have been suffering a lot with much body pain especially in my lower back. I to have been
working out doing Core Performance workouts to strengthen my core. It is so painful. There
is some chest work too in this routine. The next day my chest feels really bad. Yet, I keep
trying to do it everyday with all different exercises.
My Dreams are worst than anything life could offer. They are terrible!!! My heart too beats faster and I can feel it in my chest. So, with the pain, heart, and dreams how can you not get
depressed and anxious which only adds to the intensity of all the symptoms.
Much of the burning and tingling I have had is gone for the most part. The pain however is not gone. I can tolerate the pain in many areas of my body. Although the pain in my back
is the worst. While being toxic I hurt my back so perhaps those nerves are really sensitive to the recovery process. I work with a PT on strength, posture and diet now full time.
I do take Magnesium, and some other minerals to help the healing process. No Vitamins at all... Even though I eat really well I still feel that the extra magnesium and other minerals help. Maybe this why I thought I needed the B6 in the first place.
The other thing that really bothers me are floaters. So, more healing is needed...
Heiman thank you for thinking of me. I was thinking that I was going to write to you today
before seeing your text. I am fifty now, and I just want to live.
Forgot to ask you this. Can you explain your energy level now? Pus, I have trained as an athlete most of my life. My heart now races and thumps. Can you explain how your heart has felt and feels now. I am now on my seven month. My blood level was 90 while the upper limit
Well my energylevel is improving. Now I can do my normal things, and since my deep depression left, I like to talk to other people again. I feel that there is normal contact with others. During my depression, which was deep, very deep, I didn't feel anything. The only person who could reach me and make me smil was my little grandson. During those period my heart contstantly raced like a formula 1 car racing car. That is gone now. Also I was very anxious, full of fear, contstant thinking that the good years were gone forever. That is passed now. My optimism is coming back, I sleep mostly normal. But I ust tell you that I had a very good therapy, called EMDR. During my bad dreams I was constant dreaming about the ugly things I saw as a policeofficer. Awfull.
So, believe me, your heart will become normal again, because you were healthy!! I have floaters also, but I had them from the time I was a child, I think we mention them because we all are very busy with our bodies and health now.
So, you will be sporting again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I share many of your symptoms exactly.
I thought about a month ago I was pulling out of this. And, somehow I have seemed
to return to the scene of the crime :-). When I think the pain is moving on it returns.
So, more time to spend recovering. Do you cycle back and forth as well?
I was thinking when I wrote to you about my symptoms especially my back pain.
I realized for the first time that when I hurt myself I was very toxic with B6. So, perhaps
there area is just more sensitive as the recovery is taking place. Those muscles and nerves
probably are more tender due to that condition.
Yes, there was definetly a sort of cycle, and still there is. Especially my moodswings, which are now less and less then a few weeks ago. Sometimes it is hard to keep the faith thtat recovery is nearing, although the sign are clear ponting into healing!!
Hope you understand this terrible english!!
I sleep well, and the dreams are less and less vivid, no more noghmare as I wrote to you.
the floaters look indeed like dustballs. But I had them sinsce I was a child. In hospital, many years ago, they told me they are absolute harmless!!!!!!!!!!!
They are old cells which are floating in the eyeballs and passing the nerves who catch the light. So don't be afraid if you have them!!!! Only when then are there suddenly and many, check your doctor.
About that cushion: My experiences....sometime it it there still, but also it goes away and then then foot feels a bit weird and there is pain on the doenside. And what is special, all my toes are curling and curling, in my muscles are cramps. Not heavy, but continouisly.
Do you still know how long it took for that cushion to dissapear fully?
How is that for you??
To Jadeluca and Tzennifer,..
About the cushion, ....do you remember the first feeling of change in you cushion? And what do you Jadeluca, feel now, being in your seventh month?
My toes are constantly curling and the cushion comes and goes. Wished it was gone forever!!!!!!!!!!!!!!!
Today my energy is low, my legs feel as if they were asleep and slowly weaking up. It costs me a lot of energy bad mood, not depressive happily, and today it is hard to keep faith in recovery.
Is there anyone else with experiece with cushionfeet? please write down your experience.
Is there anyone who can describe how numbness in the extremities is dissapearing?
Someone told me that numbness is the last thing that dissapears? Is anyone of familiar with this?
Yesterday, sudden I felt a big punch into one of my teeth, as if someone was punching me in the face. Someone familiar with that?
Now my arms and hands feel tired and heavy, my thumbs are light cramping,...never had these things.
Please responce if you recognize these things.
I am having a really bad too. Muscles hurt all over the place. Body hurts all over the place. The feeling of walking on a cushion which for me was like
not really feeling the floor properly only started to disappear lately in my seventh month.
I am quite sad and anxious because as you said it is easy to lose the faith.
And, when you lose the faith were does that leave you...
This is a sad thing. As I mentioned, I also take some magnesium and other
minerals that are suppose to help with the healing. It is very easy to doubt everything at this time.
This is what I meant about cycling through this illness. It is almost like every part of our body has been affected in some way. And, it will have
to heal piece by piece. I really don't know how to keep the faith. What real
answers do we really have?
Do you remember when you talked about cracking joints? My shoulders have started to crack. How long does that last for? What did it feel like for you? I must say I hate this.
You really don't know what is going on, or whether you will ever feel well again. The mind
goes all over the place. Just when you have a moment and you feel better somewhat and you think you are doing all the right things now, the body seems to go in reverse. This seems to be worse than the first time when you really became ill. When you feel like okay I am going to
get well again and then you take two steps backwards, you lose all hope. Plus, I don't see how this hasn't affected most of our body parts. Sorry to be so negative to this community.
It is just as Heimen has said, how do you keep the faith?
If other members are looking at these posts and you have recovered please post a comment...
sorry you are suffering so much. Keeping the faith, indeed that is not easy. How is your wife dealing with that? Mine is faithfull and very optimistic, although she is concerned seeing me wrestling with dark thought, thanks for that.
I just past my sixth month and sometimes my cushionfoot is gone, the next day, sometimes within an hour it is back. I have this cushion for over two years. My right foot is most painfull, it weas the first part of my body which was affected. It started 5 years ago with my little toe, prickling and feeling as if some put an string around it. This little toe is coming alive since 3 weeks, painfull.
Some numb parts are stitching, hurting, sometimes there the feeling is back, it comes and goed. Since the cushionfoot is changing, my muscles in my legs are carmping. My toes are contantly curling, light cramps. With my mind I know those are good signs, my feelings are more sad then hopefull sometimes, although I have day with good mood and optimism. I think the lack of extra vits are causing those moodswings.
You are a technician, aren't you, why you don't build a timemachine to look over one year!! Joking!!!
Do you have numb parts in your extremities and are those changing? Please describe this proces for me if you have them?
A few days ago I mentioned that even my arms and fingers feel weird, heavy and tired. In my breastmuscles there is buzzing. Never ever felt anything there when I used multi's.
Do you have stitches in your face and in your teeth?
My problem in Holland is that I cannot find a doctor who knows sometings about this awfull disease. So I was never diagnosed with B6 toxicity, but all the symptoms were there.
Deep depression, awfull en vivid nightmares, stitching, stabbing, haertbeating like a formula 1 car, bad, bad sleep, very anxious and fatique. Stitches around my mouth, in the face, behind my eyes etc etc. Toothache, in every tooth, not heavy but not nice.
Those last 6 months were horrible, I was not able to work. Some things are much better know, good sleep, no more nightmares, very very little anxiousness now and then, my heart is quit normal, very happy with that.
Wished I could look over 6 months, but we all have to go trough all this mess, don't we.
I am a Christian, which helps me.
I pray for all of us.
Sorry visiting family.
Been off email.
I will not respond to every symptom...teeth, chest, dizzy, but I want you both to know, I HAD THEM ALL!
YES, unfortunately, I HAD THEM ALL!
They followed a cycle, started, came and went, grew in intensity, became disturbing, then slowly disappeared, multi-locations happening at once, appearing and disappearing at different times, seemingly never a peaceful moment, then gradually, had fewer symptoms, the gradually had, times of less symptoms, less intensity, then actual symptom free. IT TAKES TIME, TOO MUCH TIME!
I still have sensations in my feet!
To this day.
But not a full cushion.
From what I understand this will take the longest to recover, along with any 'stuff' in your hands.
Extremities are the last to recover.
But it will get better.
AND it will come and go.
Cracking joints still are happening.
For me this really did not happen till AFTER 6 MONTHS.
Some days they just love to crack!
Susan M. had lots of cracking too.
And from what I also can see, it happens everywhere, from head to toes!
Susan can you explain again why this happens.
My floaters are going away.
I only have one left in my left eye.
THIS WAS WEIRD STUFF!
Not painful, but annoying.
Though the shocks behind my eyes, hurt!
It sounds like everyone is healing.
It sounds like everyone is healing SLLLOOOWWWWLLLLYYYY!
May be off medscape a few more days.
Will try to check.
HANG IN THERE EVERYONE.
KEEP HEALING, though I KNOW....SLOWWWLLLLLLLLLY!
Thanks for writing a comment in.
I also take magnesium. Lately, though having more palpitations. Scary...
I feel extremely anxious a lot lately and sleep is not good.
Chest hurts on left side as you described. I feel a mess now.
I only take minerals and some digestive enzymes. Most of my tingling and burning sensations much better. My level was at 90 and we assumed I must have been toxic
for two to three years before knowing. A ND that I am working with she feels I am an under-methylator which is why the B6 builds up. I had such a bad night.
sorry you had such a hard night.
it totally does happen.
i remember them.
it makes be shutter!
my whole body would be in pain, squeezing, some parts more then others.
once the pain ended, or subsided a bit, the chills would begin.
my body must of been totally inflammed!
hang in there.
it will get better.
Hi, I took BUSPIRON, a non adictif medicine in times of extreem anxiousness. No danger if driving etc. Very light side-effects, bit headache.
Don't know the Americam medical name, but you can search for it on the internet. My doctor prescribed it for me. It works immediately.
Want to ask you: do you have numbness and is it changing?
My numb part (toes) are hurting much on this moments. I think they are awakeing.
But, bad mood today, not deep depressive, just want to pass this all mess soon. But as Jen told us, it takes TTTTIIIIMMMMEEEE.
Keep up, lets together aim fot healing.
Susan and tracy: keep on going!!
Blessings and greetings.
(I will try also to keep the faith.)
Having some really tough days... really tough days.
I thought I was totally past my chest and heart feeling funny with chest cramping, and palpitations. Now, it is back worse than ever. How can you stay positive with this.
Can you guys tell me if you went through this where it seemed to get better than got really
intense and seems to now have gotten worse.
Yesterday my left leg and knee was killing me. Today it is gone...
Hope someone can describe what they went through.
Burning and tingling is good right now. It always seems to be something. Sorry to feel
down and convey that to this forum. I can't help to be anxious about this.
I can fully understand your fear and discouragement. I also had/have/will have this to.
During the last months I experienced good and bad, very bad periods, it drives you crzay. I t drove me crazy.
But try to look for the very smaal steps forward, for example the cushion in your foor that is going to leave.
Maybe there is someone on this forum who can explain us, why our healing nerves go op and down?? Maybe there is a doctor who reply????
I try to look at those who were feeling the sam anxiousness and fear, but are healed now. Sometimes that is of great help for me, sometimes it doesn' help me.
So we have to deal with this uncertain and bad feelings but please try to hang on.'
I will try, you can do also, everyone has to, we have no choice on our way to HEALING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
keep your faith, look for psych, help!!
Tzennifer is right: it takes time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Pray for you.!!
Been trying to posts for several days. I hope this goes through.
Yes, it is very difficult and I, too have been having some very bad, bad days. But I keep reading the posts and what the drs have written to me about this condition and I try to stay encouraged but it isn't easy.
Tzennifer, you asked about bones, ligaments that snap, pop and crack. One dr explained that it is a condition called hypersensitivity parathesias (abnormal conduction of the nerves). He said it could very well be related to the B6, but it takes time, a LONG time for the body to excrete the B6 from the tissues.
Jadeluca, I am sorry to hear that you are having a rough time of it too. Our pain is different but I think the same level of intensity. My worst pain is in my tongue, teeth and roof of my mouth. The pain, burning and numbness in my hands and feet can get pretty bad at times. I also experience the sensation of my blood running through my veins feeling like it is burning!!! Has anyone had that experience? I get tired very easily and my muscles ache. I have great difficulty walking, especially when getting up in the morning...my feet hurt real bad. This is a common symptom.
I don't want to push drugs, but taking Ativan has helped me alot!!!! I couldn't survive the day without it. It helps me to keep my wits when I feel I am going to lose it.
Heimen, I wish there was a dr that would reply to this forum and give us better insight as to how long the healing process takes. But I am sure it would depend on how long we have been taking B6 and how much. My feet used to feel like I was walking on sand. That has gone away. Now they just go numb and burn. If anyone who has recovered, at least 95%, will you please respond and let us know what to expect?
Thank you and God Bless you all! Susan
Heimen, Susan, and Jadeluca:
That is the problem. We do not know what to expect.
I do not even think a doctor can tell you what to expect.
Just look at us.
ALL 4 of us, have had different type of symtpoms, at different levels of discomfort, at different times.
IT SEEMS the b6 has effected us differently.
It depends where the nerves were damaged on each of our bodies.
If you look back on this chat, you will see I listed many, many symptoms.
This symptoms effected me from the top of my head, to the bottom of my feet.
LITERALLY EVER INCH of my body was touch in some way.
The discomfort grew and grew in intensity.
As the number of cells that were healing grew, the intensity of discomfort grew as well.
Heimen, yes your numbness, if like mine, will turn to a different type of thing, pain. Cramps, stabs, burns, shocks, etc! Jadeluca, sorry about the chest, but for me it got more intense before it got better. Make sure you are not also having nervous stomach issues on top of everything else! I still get some cramping/palpations, not EVEN CLOSE to what it was, but it does remind me, that I had pain/palpations before. I am sorry you are suffering. Assuming you are healing like me, it will pass. If I did remember, everything was checked...heart??? Check with ND about St. John's Wart and SAM-e.
Yes. Oh, and the leg pain, for me, came and went, like everything else! It still does, but not as hurtful. Everything is still at it's worse at night, but not has bad as it was. NOT CLOSE! My right big toe has been shocking me tonight, or is it a stab, but I know it will go away, like it always does...it is just taking a long time! I am approaching a year, for me this is in October. There is a def. BIG improvement from last Oct!
Oh, about the popping and cracking, Susan said...
It could be from the toxicity, according to one dr, it is called hypersensitivity parathesias (abnormal conduction of the nerves). It mimicks a clicking sound or popping. Only time will take care of this. He recommended fish oil-DHA.
Susan that sand bit on the feet, is what I had/have from my hips down. I described it as sand paper! And I can tell you all, this is dramatically better! It was so bad, I hated having anything against my skin. Now this is more tolerable!
I am not sure if I specifically responded to some questions or not.
Well, me are my symptoms are going to go to bed!
So once again, EVERYONE HANG IN THERE.
At my 6-7 months, maybe even into my 8th, I was HORRIBLE!
There has been improvement.
Thanks for the post. I am at the 7-8 month now. I am horrible. Everything seems to have
come back feeling worst. Yesterday I started getting palpitations again when I haven't had them for a while. Pain in my legs down through my knees. My lower back stiff. And, sleep just seems impossible. I thought I was through the palpitation stuff along with the chest cramping. I think this is the scariest part when things come back and seem or feel worse.
Did you palpitations or that matter as you have already said seemed to come back with
intensity before getting better.
I do take magnesium with a balance mineral supplement. No vitamins...
Thanks for your time. What part of the country or world do you live in?
I stopped taking the B6 in Nov of 2009. I had many of the symptoms
including heart palpitations and chest pain. All of which I thought was getting
better until two days ago. A lot of pain and palpitations in the last two days.
I do take magnesium. Hope this helps,
Well, you are in the period where everything for me went WAAAAAAAAACKO!
WACK, WACK, WACKOOOOOOOOOO!
A LARGE, LARGE BULK of NERVES decided to HEAL AT ONCE, or WAKE UP!
I thought I was recovering, then it went NUTS.
So hang in there!
What has changed for the better, OR EVEN what symptoms seem to be going more often now. EVEN IF THEY RETURN, has anything been making a brief disappearing act at all?
I believe it. As I enter my 5th month, I feel like everything is intensifying to the extreme!!!
For ex., I am having more difficulty walking, feet are aching and buzzing as well as cramping. Oral pain is getting worse and so is my achy muscles. Much more burning sensations all over!! I am even beginning to develop new symptoms....YIKES!!!
But I hang in there like the rest of you do and know better days are ahead.
Thanks everyone. Hope tomorrow is a better day for all of you :-)
Thanks again for all the feed back and caring you bring to this forum!
Yes somethings are definitely better. For instance, most of my face issues
including my teeth seem to be a lot better. The burning in my legs and tingling in my feet which includes them falling asleep seems to be a lot less.
I hurt my back at the peak of toxicity. This area remains stiff and weak. My legs are very heavy and at times so are my arms. I totally understand the full
body cast you have spoken about. At times my body feels weak restricted and heavy with much pain. Then it leaves. I also have some cracking joints.
The scariest for me is that chest pain with palpitations. A month ago I thought this was gone. Not so! It's back. I also get dizzy sometimes with
a slight headache. Again that weak feeling just comes over me. This comes and goes too. I really thought the head and chest was behind me.
Then, there is the sleep problem. I have such vivid dreams they scare the hell out of me!!! I usually wake in some kind of terror. This happens most nights. If I could hope for two things to improve, it would be my sleep and
lower back stiffness. By the way, this stiffness moves all over the place.
It can be on my right side in the morning then be on the left side a few hours later with this I also get painful weak legs. The weak legs can come
and go within a few hours. Okay, why keep going on? The weakness and pain is just incredible some of the time. It is hard to explain if you don't have it. It is not like normal pain. Lastly, I was to the hospital for kinds of heart testing. It was normal.
It was only when I was at the hospital did I found out by accident by asking my doctor to test me. My level was 90 while the upper limit was
23 for the test. My doctor didn't think much of it. She just said stop taking those vitamins... Thank God for this forum.
Lastly, I must admit the fear component starts to drive the equation at some point because you just don't know in the end how this will go.
I have a big family to take care. I love my family and want to be there for them. It hurts when you meant to do something positive and a big fat negative arrives. I only believe in whole food with whole food supplements.
Even with that you must be careful...
Can you just tell me how sore and painful your muscles were?
I was fooling around with my son who is 21. We were wrestling. I moved my arm and shoulder
to block one of his moves and my muscle didn't move right and really hurt. This just has not
happened to me before. I am fifty, but I have always been in great shape. This is just scary.
Something is always malfunctioning... I have also lost weight with this toxicity as well.
This were the fear comes in...
My energy level has become almost zero this week. I want to sleep more and more right now.
Still very vivid dreams...
What was your energy like? I hope this is peaking and I will soon get over the hump.
Hi J. You are in great suffering. I recognize your feelings about the very vivid and awfull dreams. Suddenly waking up after horrible pictures in your mind is AWFULL. I had that to. I had them during the night, I had them during the day as I wantend to do a nap becuase of my. They are GONE!!!!!! I still have some vivid dreams, but they are no nighmares. Normal things about family, work, just things!
So, believe me, you will sleep well again!!!!!!!!!!!!!
I recognize the weakness wich comes and goes. Heavy armsmuscles, legsmuscles....I have thast to.
This is awfull and demolishes all your belief in recovery. (hope I write right English words!!)
Stifness, yes, around the ankles and toes. No nice!!
But, on the other hand: we have it all, and we are all making progress. Everyone is diffrerent, but eve4ryone is making progress.
Heimen, I don't know anything about itching, it could possibly be a symptom, but what do you mean by stitches in your teeth? Do you still have it?
Praying for better days ahead...........
Jadeluca, do you take any kind of prescription sleep aid? When I was on ambien, I had very vivid dreams, I still do but not as bad. Now just take ativan with melatonin. I have difficulty sleeping anyway. Hope you will be feeling better soon. Hang in there :-)
Hi, everybody , t this moment I the slight pain I felt in my teeth, is nearly gone. Also the stitches in my face, on my head, are much less then they were.
Now my affected toes of my right are contstant jerking and curling. La my legsmusckes are in a constant state so alomst cramp. Sometimes they do. Even the muscles under my feet are the same.
All my muscles feel heavy and tired, but manageble.
My cushion is leaving, sometimes feels stiff.
Who recognizes this?
Please respond on this question!!
I too have had the burning, tingling and buzzing. Had it for 18 months. Went to the Mayo clinic for a week came up with nothing. Blood, electro muscular tests, xrays on and on. The suggestion was to cut fats exercise regularly get good sleep. I believe this is the same advice someone who is healthy OR has cancer gets, thanks where can I pay my $10,000 and go home.
In Feb 2010 I heard about W. King Engel who is the director at the USC Keck Neuromuscular department in Los Angeles. It took 3 months to get in. Lots of blood (29 vials), muscle biopsy and a spinal tap. Verdict...... slight poly neurophy and some auto immune markers are low but not low enough to treat with steriods or IVIG. We are looking at 2 culprits now but have a baseline numbers for the auto immune issues by doing the spinal tap.
1) B-6 was over 100. Didnt believe him because I was sure Mayo must have tested this, they didnt. Went through all of my tests over the last 2 years and sure enough they were all high. No one questioned it.
2) B-12 not off the chart low but 355. He likes people like us on the high side.
so here is what he has me on:
1) Daily B12 injections until I feel better he feels 1-3 months then go with orals or 1-3 times per week as needed. No big deal grab some loose skin on leg, shoot it in. Will gross your kids out.
2) Follic acid
3) Klonopin .5 (it is point five dosage in case your eyes dont see the decimal) to allow my body to heal and sleep at night and boy does it. Fingers dont lock up at night, dont feel foot numbness, wow !! and I sleep 7-8.5 hours per night FINALLY. On ambien or Lunesta I could only go 6. I do wake up groggy but a cup of coffee and a b12 shot and I am ready yo go in 15 minutes.
Dr. Engel doesnt want me consuming caffinated drinks as it stimulates the effects. BUT I have 1 cup of coffee a day period. No ice tea, no diet cokes etc...
I am 90-95 better in about 2 weeks (remember my damage was minor). I can totally live with my new schedule. Played 2 hours of tennis (singles) on Tuesday and the guy I play with says he has never seen me run so well. so thats my 2 cents worth.
On the bad side:
1) The muscle biopsy required 12 stitches
2) The spinal tap gave me the 2 day headache.
If you want to see Dr. Engel be patient, its a slow process. He is considered an expert and has helped lots of people. Very attentive takes lots of notes as he LOVES data and is always trying to organize it into buckets for clinical studies.
Saw your post. So glad to hear you are feeling so much better. I was shocked to hear that the Mayo Clinic did not test your B6 level? Which one did you go to? I went to Jacksonville, Fl and they were the ONLY hospital, and I had been to several, that tested my B6. If only the other hospitals had tested me, I wouldn't have to be going through all this. My level was 139, and it took 4 years before I got a diagnosis.
But anyhow, you are on the road to recovery and that is what's important!
I will never take another B6 supplement as long as I live.
Thank you for sharing your story..........
I think you ask me specifically about sore dizziness, sore muscles, and exhaustion.
I think I had it all. I did feel some dizziness, but it was not a major symptoms.
Sore muscles - OH YES! Sore, popping, cracking, cramping, etc...
If my 5 year pushed me in the hip. thigh, butt area-- I could get a cramp - a terrible jolly horse.
I still get muscle pain/symptoms, and muscle malfunction in that area the most.
And boy THE EXHAUSTION! Horrible! That would come and go. The periods of exhaustion would last about 3-4 days. Start on day 1, peak on day 2.5-3, and dissappear on about day 4.
And I did notice you were worried about your symptoms coming and going. Well they will. AND MINE STILL DO.
The last 4 days my symptoms are back, especially from the belly button down, the pricks are increasing every day! Intensity, and amount. But it is still not as bad as it was. But I had a good number of days symptom free before, I look forward to good number of symptom free days after.
So, this wrestling with your son, and the hurt, doesn't sound so off the wall to me. I just took my daughter to Sesame Place and was worried about the cramping happening, it can, but it DID NOT! YEAH!!!!!!!
So hang in there. If I missed anything, get back to me.
I used 500 mg one a day for 20 day B6 vitamin, and then I used anti-thyroid drug in high dose, I lost all my sence( taste,touch,smell, heat, balance, proprioception, every sense). My central nerve system closed.
A farmacolog explain, you slowed energy cycle in your brain cell,(GABA catabolize in energy cycle). GABA level increased in your brain and also B6 vitamin can play role Glutamat transmission to GABA neurotransmitter. GABA neurotransmitter is a inhibitor (stop the nerve transmission) neurotransmitter in the central nerve system. You are living GABAergic effect in your brain.
Is there anybody who know about this and solution of this stiation??
Please help me i lost my every sense, I need YOUR HELP...
Thanks for your adives Heimen,but my situation is different. I stop B6 taking already. Your B6 toxicity in your perippheral nerves in your body, my B6 toxicity in my Central Nerve System. One year before, i had lost ALL MY SENSE(even taste, smell), my brain closed. İ used Ritalin for work my brain. There is a strange relationship betveen B6 vitamin and anti-thyroid drug. If I can't find this, my life could be a nigthmare.
If there is a someone can explain this, please write here. I NEED YOUR HELP.
"If anyone who has recovered, at least 95%, will you please respond and let us know what to expect?"
I have recovered to about 95% after a TERRIBLE struggle with many of the symptoms you all mention. I posted way back on this thread but I will say again that my levels were over 100 and I was pregnant when diagnosed which made the process even trickier.
Honestly, the 6 month mark of detox was the most painful. I was not substantially better until the 12 month mark and not close to normal until 24 months. Now it is about 4 years and I can exercise again and feel healthy and great!
Occassionally when I am overtired I will have some light buzzing or cramping in my legs. Not enough to bother me too much.
B12 was a BIG part of my healing process. My ND explained that the body uses up lots of B12 when healing the myelin sheaths damaged by the B6. I had my B12 levels tested several months into the healing process and they were low (about 300) You want nice high levels like 800. I took a very pure methylcobalamin B12 sublingual and even got some shots at the beginning.
Also, magnesium (around 800 mg) at bedtime helped a lot with the pain.
I also took extra vitamin D b/c I live somewhere with little son (the NW of the US) and my D levels were low.
So...I don't think that vitamins all together are bad if you take food based, natural vitamins. As a matter of fact, I don't know if I would have gotten better without them.
Feel free to ask any questions about how my healing went. I have chatted quite a bit with Jen from this thread.
Thank you for answering my earlier posts. Do you remember how long you suffered before you stopped the B6? I suffered for 4 years before getting diagnosed. My levels were 139.
Thery are now 12 but I am still having horrific pain, numbness, burning, tingling, cracking, popping and thel list goes on. I was asking because, do you think the longer one goes without a diagnosis, the longer the healing process takes? I was only taking 2 mgs except for a few months between 2007 and Mar 2010 when I saw several drs who put me on EXTRA B vitamins for months at a time.
I take acetyl L carnitine with alpha lapoic acid, fish oil-DHA , methyl B12, Vit D and C.
Did you take B-1?
I am in my 5th month of recovery, so by your calendar I have a little ways to go.
Thank you for writing. Your info was very helpful to me and to the others I am sure.
Take care and so happy to hear you are well!!!
I was only toxic for a few months before discovery. I am a typically VERY healthy and also sensitive person so the instant I started having strange symptoms, I went to get it checked out. It took my ND about six weeks to diagnose the problem. I had only been taking the higher dose of B6 for a few months so there is no way I was toxic before that. My levels were over 100 so it got bad fast. The biggest problem for me is that I relapsed. After the first detox and the birth of my baby, my regular DR talked me into taking a prenatal vitamin with a lose dose of B6 in in b/c I was breastfeeding. Within 2 months, my symptoms returned (worse this time) and the blood test showed levels over 100 again. I believe that once you are poisoned by B6, you can't tolerate any amount of the chemical version of it. I would suspect that the longer you were toxic, the worse the damage on your CNS and the longer the healing might take. That being said, you WILL HEAL! Our bodies are truly amazing and given the right support, can recover :)
Has anyone on the forum ever have any problems with their ears? I DON'T mean ringing in the ears but a fullness or the cartilage of the ear(s) hurting? I don' t know if this is a symptom of B6 or not, all I know is that my ear bone hurts ALL the time.
Write back and let me know if this was a problem for you and also, did it go away???
I think that Jen has mentioned several times in her posts that there will be 3-4 good days then all of a sudden, you will backslide and have 3-4 bad or very bad days. It is normal as we heal. It is the nature of the beast. I don't fully understand it either, maybe it is what we eat, if we are eating foods high in B6.
As for the mood issues, I don't know. Are you in a bad mood or is it anxiety or even depression.?
I think we all experience all three since we are so frustrated with being sick and feeling awful all the time. For some, it has interruped our lives. I know for me, I can't work right now or even spending time with friends is very limited since I don't know how I will feel from one day to the next. I think you understand this. Maybe someone else on the forum can help us to understand this better.....gee, I wish we could get a Medical Dr to join this forum and give us better insight into all of this.
Hang in there! There WILL be better days ahead :-)
Hi Susan, you'r right, Jen mentioned this and she is right.
But even knowing this, I also would like to hear from a doctor why this all is happening in our bodies.
A period of good days, changes with bad days. Suddenly, without warning.
One knows that, so I don't feel depressed as I was. That was awfull, that was pure mental darkness. A depressed human being is sick. I am so happy that period passed away. No, there is defintely a great difference between a bad mood and a depression. But that makes a bad mood no nice happening, does it. One can loose his confidence within an hour, that is my experience, especially when you feel new symptoms you never felt before. The first thought is: O,....will it become worse, will it ever stop, am I the only person who will not recover, is this recoverstory not a very bad joke? But when you compare things, there is a new belief in o good future. So sharing our experiences is very good!!!
The big problem for me is that this disease in Holland is totally unknowm. There are few publications, but I cannot find other Dutch sufferers who are inn detox and recovering.
Bad mood, sometimes discourage, that'm s what I feel. My anxienty left a few weeks ago. No more medication needed. I sleep well, some vivid dreams, but not many, no more nightmares. Sometime a little hartbeating, especially in the morning. Not nice, but I know my heart is healthy.
What I don't like is waking up, feeling the numbness again which left the day before. I think a good thing is that the numb parts are becoming to hurt more and more.
There is a lot of electricity going through my feet and legs, painfull stitches and stabbing. Sometimes also in the numb parts. But the normal feeling didn't retunr untill now.
Bad days start with heavy, very heavy feeling in the legs, starting from my back. Tired, intens tired feeling.
The toes of my right foot are contant jerking and curling, they are in connection with the legmuscles who want to go cramping for almost the whole day. I thnkt that this a cause of the tiredness in the legs. The muscles are constant working. My left foot start with the same process. Also my arms and hand feel heavy.
Just past my 6 1/5 month. Still to early I think, Jen told me also. I think she is right. But my bad mood doesn't always wants to belief that.
Glad to hear things are improving for you. Question for you: What do you mean by "stitches" in your teeth? Describe it to me and do you still have it?
My oral pain is still very, very bad and now my ears are bothering me. I had surgery on my left ear (hole in the superior bone) and that was 9 months ago and it is still giving me trouble and the other ear is too. I don't know how much of this is B6 or just a separate issue altogether.
It is still too early for me, I guess to see any change, since I am only 5 months into being off B6. Still experience a great deal of pain everyday without relief, and my depression and anxiety fluctuate.
It is amazing how quickly the days seem to fly by when you are healthy, but when you are sick, each day, each hour drags by ever so slowly. Have you noticed that too? I agree that sharing our experiences is good, therapeutic is the word I like to use. I too, sometimes worry that I will always feel this way and never recover. But then I shake that negative feeling and try to distract myself and know there is someone who is alot worse off.
Hang in there! And please let me know what you mean by "stitches".
Hi Susan, well, sometimes I feel in different teeth, tooth after tooth, a painfull, light stitch. Short and they follow up to each other. Mostly at the same time I feel prickling in my face. This is more and more less then in my 4 or 5 month.
I didn't have pain in one ore both ears, only I felt some stitches aroud the edge of my ears. Not very painfull, and not very often.
Hoping and waiting for better times for all of us,
Sorry to hear that. I had muscle pain too as well as neck pains, I think it is the B6, but I got a couple massages for relief.
How long have you been off the B6? I am at 5 1/2 months into recovery and still having bad and very bad days.
Make sure you are not taking anything with B6 and eat whole, nutrional foods. Drink alot of water, since the pyrodoxine is excreted through the urine.
Are you taking any supplements like methyl b-12 to help with nerve pain?
Hope you will be having better days...:-)
I'm 31, I've been fighting symptoms for over a year and a half. My symptoms mostly involved unsteadiness and imbalance in the beginning. I received an MRI and CT scan to rule out tumors and MS. I gave up trying to figure out what this was on 2009, but returned to the doctor in April 2010 when I started getting worse.
This year, I determined that I was experiencing subclinical hypothyroidism, but all doctors agreed it wasn't bad enough to cause all my issues. I received temporary treatment until my thyroid levels came back into normal range. My GP had previously found my B6 level to be a 96 when the normal range is 5 to 30. He blew it off and didn't think it was causing my problems. I also realized had stated taking a whole food multivitamin in March 2010 that had 25mg of B6. All my symptoms got worse and new ones appeared.
I called my Neurologist and he had me take another B6 test while fasting. It was now at 100 (a couple months after the first test). He told me to stop taking B6 supplements and stop eating fortified foods.
I stopped all B6 except what occurs naturally in food. My current symptoms are:
- Imbalance comes and goes but it occurs every day
- I've had a lot of trouble focusing on the computer screen. It has gotten somewhat better. Sometimes I feel wobbly in my chair and find it hard to sit steadily upright.
- Trouble remembering details from the previous day.
- trouble focusing mentally. I feel confused at times. It does seem to be getting better.
- cold numb hands and feet
- When my forearms get cold (like when the air conditioner kicks on) my forearms burn
- Sensitivity to bright light and sounds
- Ear ringing constantly which drives me nuts
- I have a lot of tremors and buzzing feelings. My teeth chatter a lot.
- Alcohol makes me feel much worse.
- Fatigue, I fight hard to keep exercising but at times I'm just too tired.
- Mood swings, I think this is stress and frustration based
- Depression from fighting this so long.
I took Magnesium (Natural Calm) for a couple of months to help but I think it was making me worse so I stopped it recently since I get a lot from my diet.
I gave up multivitamins and currently take B1, B5, Folic Acid, Methyl-B12, Vitamin E, Fish Oil and Vitamin D.
I'm wondering if others have these symptoms and haven't associated them with B6 Toxicity? I assume all of it can occur because of nerve damage.
Welcome to the forum! First of all, when did you stop the B6? If you have read some of the previous posts, this condition is a very tricky one, and everyone is different. Our symptoms can vary in degree and intensity. Some remain constant and others come and go.
I have the burning like you but I haven't noticed a mental confusion. Depression is common with this condition because we are battling this every hour of every day and it is hard to live life to the fullest when we are feeling so miserable.
I have written to several drs about this topic. I have been told to stay off B6 supplements and to allow 6mos to 36 months for healing. Also, Dr Andrew Weil suggested acetyl L carnitine with alpha lipoic acid and omega fish oil-DHA, and I too take methyl B12.
Pray alot and know that you will get better but it does take time, alot of time and patience.
It might help you to read the posts from others suffering.
We are here to help you and encourage you.
Write again and let us know how you are doing.......:-)
This is my first post. My son's first B-6 test came back 199. His doctor said she had never seen any test result this high. This was in April of this year. We are awaiting another result from the Quest Lab. My son has lots of sleep issues ( trouble falling asleep & screaming in his sleep), He primarily has CNS problems with anxiety, attention, depression. I've read many of your posts and they are very helpful. Last January we went to the Pfeiffer Clinic in Chicago. We believe Mike to have a problem with undermythelation. We have since stopped all B-6 supplements. Mike also has a Lot of congestion in his head. His head has a "stuck" feeling often behind the ears. Once in a while it feels like an egg dripping down his head and it moves around. Mike has Lyme disease and some co-infections so it is difficult to know what is causing what symptom. In any case the repair to the myleon sheathes is needed. He is on B-5, a high quality fish oil, lipoic acid, GABA, inositol among many other things. (The GABA and inositol is to address his extremely high anxiety level. He was on Ativan and he is off this. Thanks for all your posts. Enough of you have mentioned sleep and CNS problems that it alerts me to B-6 toxicity being a player in his problems. He has very little physical pain, just a little shoulder cramping. Does anyone else have the congestion, brain fog and egg dripping sensation? Thanks for sharing.
Tator, you are lucky in my eyes. I was lost all my sense( touch, smell, taste, proprioception, pain, hungerness, tiredness, balance, sleeping, no heartbeat, heat) I supposed my soul abandon from my body. Also my brain slow down, i can't talk fastly, i can't walk, where are my legs?
I used 500 mcg in a day, nothing changed, but after usage of B6 vitamin supplement, i used anti-thyroid drugs(propycil) high dosage. My metabolism slown down, then this event occured.
I tell everybody about B6 toxicity, but my stupid family and stupid Turkish Doctors did'nt understand anything. In Turkey, nobody familiar with B6 Toxicity. Everybody thinking about me going mad.
You know what is going on in your body, but I don't. I'm living one year with this situation. How long it will take, when will my sense return back?
You are lucky, there is nobody can help me, I'm %50 persantage death.
I'm unlucky, because of I'm living in an undeveloped country. Undeveloped brains. Nobody care about me, nobody hear me.
aIt might taka a long time, and symptoms may get worse first, but there will a time of healing.
One of the first things wich return is that you feel your legs again. This is called ataxia. I had this too in anonther form. It was very quick dissapeared.
So watch your legs! It is the first sign of healing.
I live in Holland, also my doctors didn't know about b6. It does not exist they said.
Now in the university of Utrecht they are examining this strange disease.
Thank you for your effort giving me morale. But you don't how I'm a miserable now. I tell everybody time to time but, my stupid parents laid me hospital for mental diseases. and then inject me physcotic drugs. My brain was closed. They will not send me money for my school expense. My suffer increasing. I can't complete my undergrade program which mechanical engineering. Alot of lesson waiting for me.
I need solution. I was a long distance runner once upon a time. Now, I'm a psycho who can't feel body...
Hi! I am so sorry to hear that you are suffering so much. I want to assure you that you are not alone. We are all suffering and in different ways and degrees of intensity. The important thing to remember is STAY AWAY FROM ANY B6 SUPPLEMENTATION. Eat healthy as much as you can and drink alot of water.
How did you find out you were toxic? What were your levels? How long since you stopped taking B6 (that is, assuming you have stopped)?
I stopped last Nov when I got my diagnosis, but relasped in Mar when I took a supplement with B6. It took me 4 years to get a diagnosis. I am an American and live near some of the best medical institutions, but they never checked my B6. They thought it was all in my head and put me on anit-depressants. For a time I did think I was living in the Twilight Zone. Over time, I couldn't work and had to resign and move in with my father. It is a humbling experience. Finally, I went to the Mayo Clinic in Jacksonville, Florida and they told me my levels were 139. So, I am happy and very relieved to know that it is NOT in my head and that I have an official diagnosis. However, some people still look at me like I don't know what I am talking about and even my own family physician has never heard of this condition. The owner of the health food store that I do most of my shopping, asked me how could I get a toxicity from a water soluble vitamin?
My point is, it doesn't matter whether they understand it or not, the important thing is: YOU ARE NOT CRAZY. Your body has been poisoned, but the GOOD news is that you WILL recover from this but it takes time......a LONG time. A few drs that I have corresponded with have told me that it takes anywhere from 6months to 36 months.
Can you find Omega 3 fish oil-DHA and acetyl L carnitine with alpha lipoic acid? Also, take methyl B12 sublingual. These were recommended for me to take to assist with healing. I am at the beginning of my 6 month of recovery and I am still having bad days with my nerve pain, difficulty walking, muscles aches, joints popping, fatigue and much more.
Please remember that we are here for you to make your journey back to recovery as comfortable for you as possible. We care about you and I will say prayers for you as well. Let me add that one dr told me that it is a rare phenomenon and some doctors don't believe it even exists!!! Even here in America, some of the professionals in the health care system have never heard of it and I saw 6 neurologists and not a single one tested me for B6, so it is not uncommon that physicians are clueless about it. The material is out there, they just don't read it!!!
Take care and I hope you are feeling better soon :-)
I'm a little different from you. I have no pain. I can't feel lots of senseation. I suppose my toxicty occured in my somatic nerve in my brain. First, I supposed this situation due to anti-thyroid drug, but after my memory return back, i remember i used B1,B6,B12 complex, i saw a web site excess of B6 vitamin can cause temprory deadining nerve...
I used 500 mcg in a day for 21 day. And then my stupid doctor gave me 250 mcg for 35 days again. November 2009, I stopped taking B6. After 10 months, my touch, taste, smell, heat, balance senses return back. Still there is no voice from my internal organs and muscles. I have no pain, no hungerness, tiredness. This is called proprioception I suppose.
No hospital looking B6 level. Just I can test in special labs who expensive price. Should I test my B6 level? Can it change something? I don't know. After a lot of test, my family will not permission B6 test.
But I can say easily, B6 toxicity can only emerge slow metabolism. I'm the most obvious example.
I have a suspect, my metabolism maybe still slow, but it doesn't seen blood test (TSH, T3,T4 hormones).
Thank you for your attention and giving effort me morale.
When things don't change and you continue to try things, or when you get the smallest little window of relief and your hope soars then fades with the same old thing, it is difficult to remain positive. I thought I had a small window earlier this week which closed up. Sorry for not giving a more positive report. I have started trying transdermal magnesium. See how that goes...
What is transmdermal magnesium? Have you tried methyl B 12, sublingual form? (I buy Jarrow's formula). Your body uses up alot of B 12 as the nerves heal. Fish Oil -DHA is good too.
Keep us posted and hang in there! Better days are coming.........:-)
Hi everyone, indeed less postings. It is a very weird disease. It brings you bad things.
'My numb parts are very tough, although they show more activity inside. Pain and prickling. Lots of stabbing in both feet. Hope those are the good signs of revovering nerves. And waiting, waiting, waiting.
My mood is mostly good nowadays, I am able to work a few hours a day. Somteimes bad moments during the day, but I feel also very good days.
Will we heal, well let's not loose hope. I think that B6 toxicity is awfull, but is maybe the only cuase of neuropatihie wich can be taken away. That means that some day we will be healed or at least the neurpaty will stop.
You are so right. We should never lose hope. At least we have something that we know we will overcome rather than have a degenerative disease where we continue to decline.
Some days I feel more hopeful than others and it is then that I can get out and run my errands.
My symptoms are changing, I don't know if that is a good thing. It is weird and I really think I could handle this better if it was anywhere but in my tongue, gums and teeth.
Those areas are so sensitive anyway that any additional pain just makes it less tolerable
But I will stop being negative and try to remember that this is all part of the healing process and we must go through it.
It helps to keep in touch and encourage each other.
And know better days ARE COMING!
tator750, thanks for mentioning the normal B6 level range! My Dr never told me. All I knew was that my B6 level was 47 when I asked them to test it. And they weren't worried. But nothing that I've heard of, other than B6 Toxicity, explains my pain.
I've been off B6 and Folic Acid completely for 11 months now. I still have constant tingling in my hands, feet and breasts. They always feel like after a body part falls asleep and you start trying to move it again. Like someone's shooting nails into you with a nail gun. Very painful. Interestingly, my hands and feet seem to be getting worse lately, but hopefully that will subside soon. I'm so sick of being in this pain. I've had it since 2007. I know you can all relate.
Heimen "Pain and prickling. Lots of stabbing in both feet. Hope those are the good signs of recovering nerves. And waiting, waiting, waiting." Yes, that's exactly where I am, too.
I was reading an article in MIT's "Technology Review" magazine tonight and one part of the article said something about how there is fatty tissue which insulates nerves. It reminded me of something I read once about how B6 is stored in fat. Now, I'm wondering if a lot of our pain is caused by this fatty tissue which insulates the nerves. I didn't know there was fatty tissue around nerves. It makes me wonder if we lost tons of weight and body fat, if that would make our symptoms go away faster. Has anyone had any experience with pain decreasing more quickly because of weight loss?
einy, I've had congestion all my life (allergic rhinitis), so it's hard to know if B6 has affected me that way, sorry.
tator750 and smorris0312, I have greater pain when I'm cold, too. I'm told that's common of neurological problems - that cold and vibrations increase the pain.
vardic, I don't find that US doctors know much about B6 toxicity either. Most of them look at me like I'm insane when I mention what I have. They must think I'm making it up to get attention or something. I'm sorry your mechanical engineering education has been put on hold. That's what I got my bachelors degree in. I don't know much about all this medical stuff.
smorris0312 "owner of the health food store that I do most of my shopping, asked me how could I get a toxicity from a water soluble vitamin?" YES. I've been asked the same question by a nutritionist at the local organic food store! I told her that unlike vitamin C, your body doesn't necessarily get rid of the excess. I think she thought I was insane.
I think you and I have similar symptoms at least when it comes to nerve pain. Like you, I have excruciating pain CONSTANTLY, but it is in my tongue, gums, teeth, hands and feet. It is worse after eating or after walking or sitting for long periods of time. In the morning, I can barely walk because my feet hurt so, so bad. But after a while it eases up. My oral pain is the worst and changing, it seems to be intensifying as I am in my 6th month of recovery. I guess I have a long way to go yet. I eat foods with B6 but cannot tell a difference. Why are some days much worse than others, I don't know.
The waiting is the hardest. I just take it one day at a time like everyone one else.
Did you go through a period where you thought your symptoms were getting worse before getting better? Is this normal? Some of the others on the forum said they got worse before getting better.
I am hoping for better days ahead.
I also have numbness, muscle aches and snapping, popping and cracking in my joints all over my body. Very weird. My face has been hurting like I have been hit in the face. It hurts for me to talk because of the intensity of my oral pain and the muscles around my face are tight and burn. Has anyone experienced this? I would like to hear from you.
I am glad you started the Medhelp group. It has been very helpful.
Have a great day!
Don't get too hung up on a number value on the B6 level. The important part is the normal values reported with the test result and see if your value is high. There can be different normal values depending on the method used to analyse the B6. Some tests like hemoglobin will have a normal that is more standard while chemistry testing can have vastly different values depending on the testing procedure employed. Plasma levels of B6 come down real fast but the problem is the toxin that has gone into your tissues because your body has not processed it properly. Your plasma B6 can be normal but the symptoms persist for a long time if you became toxic.
That "fatty" substance that surrounds the nerves is called the myelin sheath. It protects the nerves much as insulation around electrical wiring. If that sheath is comprimised, the result is neuropathy. Fortunately, the sheath has the ability to regenerate. But some people are unable to regenerate it because of ongoing damage. I don't think B6 toxicity alone would permanently damage the sheath but as you have indicated before, it takes a long time for nerves to heal. Not all of the nerves have myelin; the small nerves on the skin are unmyelinated.
Before I stopped, febr 2010, I didn't have problems with my hands.
Now, in my 8 month, my fingers get involved.
Does anyone recognize this? I don't see any progress. My numbness is less in the evening, comes back after waking up.
Prickling in my face and theet returned.
My ankles feels stiff. My legs fgeel tired and heavy.
All symptoms of increasing neuropathy, so it seems.
Hi! I think you are okay. Try not to panic. I, too have developed NEW symptoms that I didn't have before, so I think it is part of the healing process. Meganamy, Jen, or Samvay, could you verify this?
I think we develop new symptoms as we download the pyrodoxine. I know it sounds weird, but it is all I can think of. I sure wish there was a doctor out there who reads this forum and can help us to better understand what we should expect as we heal from this condition. Hopefully one of the others can answer your question Heimen. I am still in the early stages of healing and changes are taking place, so far, nothing good, only new places aching, burning or stinging in places that didn't bother me before. Maybe it IS normal. Can someone help Heimen? Please respond.
Take care Heimen. Sending prayers your way.......:-)
I have recently diagnosed with Vit. B6 toxicity (from sea food and B complex supplement) and some heavy metal poisoning (sea food).
My main complain was joint pain / popping, muscle twitching, weakness etc and after i stopped supplement, i started having other issues, joint pain got severe, tingling started, muscle twitching increased, and I become unable to work anymore. I can't even drive my car now.
It has been two weeks since i stopped Vit B Complex and started diet with low Vit B6. My level was 187 ng/mL while it should be under 21 according to my Doctor. I am going to see a neurologist this week.
I remember, i have taken sea food (salmon, 1 serving 3-4 times a week) and B-Complex Supplement for two months only.
How much do you think it may take for me to get better? what i am hearing from here that it may take 6 to 36 months. Man! that is a lot.
My doctor says i should not take *any* vitamin supplement or pain medicine. While what i am hearing here, is that people do take supplements and Vitamins to boost up the healing process.
I would highly appreciate if you can recommend me what should i do? and what should I say to my neurologist if he doesn't know about Vit B6 toxicity (i have had this experience here in US, where very few doctor know about this, in fact, my doctor checked vit B6 thinking that it may be low).
I would highly appreciate your help.
Welcome to our forum. Glad to hear you got a diagnosis. Truthfully, all I can tell you is that some people take nothing at all and let their bodies heal naturally. I am taking methyl B12 (sublingual form) Jarrow's formula, fish oil-DHA, and acetyl L carnitine with alpha lipoic acid on the recommendation of Dr Andrew Weil. As far as how long it takes your body to heal will probably depend on how much you took and how long you took it and probably how high your levels were. Waiting is the hardest for all of us. As for me, it seems like things are getting a whole lot worse now and like you, I had to resign from my job.
It really cramps your lifestyle. I would advise not taking any supplementation of B6, so let your pharmacist know this because I think pyrodoxine could be in meds, although I am not positive. I have a question for you...........why did your dr tell you to stop taking pain meds?I
Just curious. I take aspirin daily as I have head pains and body aches everyday and it helps me get out of bed.
You are right. Not many drs know about this and one dr told me that B6 DEFIENCY can cause neuropathic pain as well.
I woud really be to your advantage to take your time and read everyone who has posted. It will help you understand how it has affected us and what we have tried to help ourselves.
We are here to help you and encourage you as you go through this journey. You will not be alone. I hope this has helped you in some way.
STAY POSITIVE,,,,better days are coming!!!!! Susan
Thanks Susan for your kind reply. I hope you are doing good.
Probably my doctor recommended me not to take any pain medicines because i was having some stomach issues. But I could not resist the pain and some time i take tylenol or ibuprofen.
Did your doctor give you prescription for acetyl L carnitine with alpha lipoic acid? or they are available over the counter? what is the strength of Vit B12 you take? I am gonna see a neurologist coming thursday and will discuss these options with him.
I can't beleive that very few doctors are aware of this condition. I am in this state because of stupid doctors who initially keep guessing that it may be arthritis, or firbomyalgia or celiac etc etc. and unfortunately, while they were in guess game, they put me on B-Complex supplement without even knowing my B6 level. Finally, a Rheumatologist did a lot of blood tests and he did B6 thinking that it may be low but it came back otherwise.
I have only taken B-Complex for two months or a bit less. now i have stopped it for last 2 weeks. interestingly, tingling, numbness and severe pain came after that with increased twitching and popping. I have had one episode of severe dizziness as well. Now, I am on a very strict diet. I only take goat meat (as it has relatively less B6 than other meats like lamb, chiken beef etc) with rice, 1/2 apple a day,1-2 cups of tea, few spoons of yogurt, some time mung split soupe etc. Kindly let me know if I need to adjust the diet in any way.
Lastly, thank you so much for your reply. I hope everyone feel better soon and get out of this mess.
Good morning! No, you do not need a prescription for acetyl L carnitine with alpha lipoic acid. I prefer to order all my supplements online because it is cheaper. I order from iherb.com. I then click on "J" for Jarrow's. I order acetyl L carnitine with alpha lipoic acid, it is 500 mgs. I order the Jarrows fish oil-DHA (this is a must from Dr Weil) as well as methyl B12 (1000 mg). I take the fish oil and acetly L carnitine twice a day, morning and night and the B12, just once a day,,, just put it under your tongue.
If your neurologists is anything like the ones I have seen, they don't know about supplements for healing. The neurologists thought I had trigiminal neuralgia because at the very beginning, my symptoms were just in my mouth and face. Then they thought I had MS. And finally they felt that I was depressed and that my oral pain was brought on by a psychosematic illness. I said, so how do you explain my feet turning purple??
I do know that there is not much you can do for pain, at least nothing that has worked for me. I have tried them all. As I said before in an earlier posts. I take ativan (prescription) and it helps me with pain. I don't know how it works but it does.
I saw close to 20 doctors before one hospital decided to check my B6 level. I looked at my previous labs and nobody ever checked it until then. Sometimes I get upset when I think of how many times my blood was drawn as they were looking for something, but never found anything. I am glad I never gave up. My family dr told me to "learn to live with it". That is when I decided I needed a new dr.
Well, I am getting a little carrried away, but just wanted to tell you that as far as food is concerned, I try to avoid foods high in B6, but if I eat them, I can't tell a difference. Drink alot of water. And get plenty of rest. And most of all try to STAY POSITIVE.
Have a great day!
smorris0312, I do seem to be having worsening of some symptoms while others are lessening. The constant breast pain seems to be lessening but the tingling in my hands seems to be getting slightly worse. Or else, I'm just noticing it more because I'm not so focused on the breast pain. Interestingly, all the pain on the left side of my body is a bit worse than the right. My right breast is not as painful as the left, my right hand is not as tingly as the left.
ranger853, one of the 18 Drs I saw for this condition, a naturopath, said that she was surprised that I didn't have constant headaches. She said that if the damage or B6 buildup were in the fat cells, that my head should always hurt too. Apparently, breasts and brains have the most fat cells in the body. I wonder if the fact that not all nerves have myelin sheaths explains this discrepancy in pain.
Heimen, in the past year or so, I have noticed that I've had more muscle weakness, in the form of fine motor problems. For example, I can lift heavy things, so I'm not weak that way. But I don't have precision. If I'm going to bend over to pick something up, I have to brace myself on a table or stabilize myself somehow and slowly bend over. If I move too quickly, I lose balance and muscle control and fall over. I look perfectly healthy, but I have to be very slow and focused when I move too much or else I drop things or lose my balance. I don't remember this being an issue when I was on the B6 vitamins, so I'm not sure if it's part of the healing process or unrelated. For what it's worth, I'm 35 years old, so I don't think that age is a factor. I'm keeping an eye on it. It does not seem to be getting worse. It does seem related to muscle use because I'm better early in the morning and have more issues as I get more tired or if I've walked too much.
Thanks for your answer. I am now in my 8 month. Sometimes it seems to go better, sometimes, not. It is all very confusing. I remember Tzennifer mentioned that she didn't made any progress until the 9 month. So I hope that it will be the same to me.
There were some changes but I cannot figure out if those are the better or the worse things.
More pain, stabbing, changing cushionfoot, sometimes the skin comes alive on my toes, sometimes it os gone. Changing weakness. Sometimes pain in the numb parts, then within a few minutes all can be back.
Still searching for someone who can tell me someting about his or her experience with numbness. Did it go first, did it leave last, how was that process? How long did it take for the numbness to leave....lots of questions.
Hi Jen! I have tried 3 times to reply to your email, but it will not go through. Thank you for sharing that info with me. I am confused by the first statement, When you take too high a level of B6............All I was taking was a children's chewable Flinstone vitamin, 2mgs a day. I know I also had Centrum, which also had no more than 2mgs. So maybe, it really doesn't matter the dosage, it is just that our bodies cannot download the B6 at any amount.
1 mm a day??!!! Oh My Gosh!!!!! No wonder we are miserable for so long.
That info was very useful and helped me to better understand what has happened, why it happened and what can be done and what to expect in terms of the healing process.
I am approaching my 7 th month of recovery. I see a little improvement maybe just 1mm!!!
I hope all is well with you. Better days are coming!!!!!
Very interesting...She said that if the damage or B6 buildup were in the fat cells, that my head should always hurt too. Apparently, breasts and brains have the most fat cells in the body. I wonder if the fact that not all nerves have myelin sheaths explains this discrepancy in pain.
My understanding is that b6 toxicity is this....(Susan, Heiman, Jim...repeat!)
We get plenty from a healthy diet. When you take a (too high) vitamin b6, and there is an overload of b6, our body somehow looses the ability to excrete the b6. It is stored in our muscle and fat throughout our body! This fat includes the fat around our nerve cells. This cause the destruction/erosion of the nerve cell receptors or the sheath coating. In turn, this causes the various muscle difficulties - like your difficulty walking -- PLUS the million other nerve related symptoms. So, we stop the b6, the excretion process is able to begin, and eventually balance itself out, because it is after all water soluble. That is why recovery is said to be possible, if done in a timely manner. Sometimes nerve damage can remain, due to the fact the nerve is beyond repair or dead. Put this has been mentioned many times as rare -- usually a diagnosis (by elimination) is made. The excretion process is usually the easy part. It is the nerve cell part that is the difficult part. Because we have millions of nerves, and each of them all of many receptors! And all these control our body functions and movements! Now, the process of cell regeneration/repair is extremely slow. So slow, it makes me want to scream. A mm a day. Probably worse then that, I just can not remember! But the protective sheath, which we have unwittingly destroyed, has to repair itself! Thus the symptoms improve, slowly, the symptoms themselves get fewer, slowly, but at the same time more intense!
Does this sound correct? Could you fill in the gaps.
I would agree, everyone's body is different. Somewhere back, sometime here, someone posted that their doctor had believed that some have a greater predisposition to this type of toxicity. Perhaps, that is true.
Look back on the articles I sent you, is there one about how b6 actually effects the receptors of the nerves. I wanted to see that, and I don't have it here with me on this computer. If you find it forward it to Meganamy.
I did B6 (pyridoxal-5-phosfat) test, and my level shows 33 ug/L (normal value must be 3.6 - 18 ug/L). I'm the eleventh (11.) month giving up B6 supplement. Still i can't understand why my numbness carry on every part of my body? I can't feel lots of sense, no pain, no tiredness, no hungerness, muscle situation...etc. What is it?
I think Heimen also has issues with numbness. It makes me think that that symptom level (numbness) is even more B6 toxic than just having pain. And that when the body heals, you and Heimen will have more feeling and more pain until it finally all goes away. I never seemed to have sleep issues from B6, however, I've always had weird sleep habits, so it's hard to tell what the B6 toxicity has affected. My appetite (hungryness) has never been affected. And until recently, I didn't really notice muscle issues either.
Tzennifer, fascinating information! Thanks for sharing. I think you may be on to something!!
5 years ago, before my B6 toxicity, I had a ganglion cyst removed from my left wrist, and they had to remove some nerves, too. They cut about 3mm of the nerves off. The nerves regenerated at a rapid rate. I'd say by about 12 weeks after surgery, my left wrist was 100% normal again!
We must be clear when saying one is numb.
I was numb too. But numb in the sense of a 'sleeping foot' type numb.
I had so many pins and needles, it developed a type of cushion in the foot, a numbness. Despite the fact I had it, I could still poke a pin in my foot
and feel it completely. The sensation was not as great as the other foot, but it was felt -- that was a good thing. Though walking was a bit weird!
Then there is complete numbness! Like the kind after a dentist gives you a shot, no feeling what so ever! And there are no nerve sensations at all.
Vardic why are your b6 still up?
What are you taking exactly now?
Vitamins? Herbs? Medications?
Numbness: My numbness is around my two big toes. Sometimes is feels totall numb, no sense. Stil there is life in in it, poking with a pin gives result, a sense of feeling. Now, from until july 2010, after 6 months after stopping, there are stitches, pain, prickling in those parts. Last few weeks, sometimes it looks there is some progress. The skin give reaction, pain comes through. However every moring, numbness is back, but directly after wakening up, stiching starts. During the day I can feel ( very very slight) my skin again. Does anyone recognize that?
Tzen: have you got new information? Please send it through.
About two weeks ago, I mentioned that my toes from the right foot, begin to work more together, very little, but it seems there is progress. New is that my big toe and the toe right next to this, sometimes plop, after then they feel more free in movement. Also they are painfull.
Unfortunately there are new problems in my arms and hands. Probably they were affected too, but I didn't noticed that.
I have no headaches, good appetite, but lost too much kilograms of weight. Stress. Now have problems with my stomach.
But, still able to work and this is of great help. Working is a good way to reset your mind.
I don't know, why still up my B6 level, but i can say i used very high dosage ( 500 mg in a day for 25 days and 250 mg in a day for 35 days = 19000 mg total).
but I have a difference from you, this thing cause to be weird my situation,
when i used 500 mg X 25 days B6 vitamine, there is no difference and my metabolism was fast, but after i used anti-thyroid drug for 9 days, my metabolism slowed down and i lost all my senses suddenly. I didn't feel my body. There was no impuls from my body. Today 13 months past, some sense retuned back, but still lots of sense absent.
Now, I don't use any drugs or herbs. I'm only trying to solve my problem, i research everywhere, i'm looking your message, but there is no spark...
Do you think my B6 level 33 ug/L (normal value 3.6 - 18 ug/L) is so HIGH?
Ah! Definition of numbness. I define numbness to mean "I can't feel anything." When I have the sleeping foot type sensation, which is what I have in my breasts, I call it "pain." Like pins and needles. Or burning. It feels like someone is shooting at me with an automatic nail gun.
I call numbness: not able to feel anything. That is different from the sleeptype, pins, needles. My numbness, in the big toes, is sometimes total, however deep in the skin is ability to feel. Yesterday the total numbness in one toe changed and I could feel the skin again. Now, after waking up, numbness is back but also pain. That was a new type of experience.
Maybe Tzen is right, the nerves are coming alive.
I have no complain about my metabolism and my health. Just i have a very very little hair loss. An assistant doctor wanted a general blood test, my TSH was a little high (normal value 0.4 - 4.0 my value is 4.3) and he claim that you have hypothyroidism and he prescribed thyroid hormone and he said "You'll use this hormones all over your life". Unfortunetally, he was wrong but I used hormone 45 day. My metabolism get fast, it was so fast, i lost my weigth 8 kg. Another doctor prescribed B1, B6, B12 vitamine and another one gave me anti-thyroid drug to slow down my metabolism. After all of this, i lost all my sense.
I'm sure that B6 toxicity occured after slowing my metabolism. Before anti-thyroid drugs just i have pain. My sense was normal.
I can say everybody, I'm the real victim of B6 toxicity according to wikipedia description. You have only the live B6 toxicity in your perriferal nerves, but I have the loss of perception. My toxicity is real.
How much can you complain?
I seem to have more muscle and bone pain with dizziness than everyone else.
My knees have gotten in on the picture. Does anyone else have bone, joint and muscle pains?
Did your knees just hurt...
The contrast is so sharp for us in our lives. We so know what we want.
Our health more than anything else because we know that is the cornerstone
of everything else. So, we focus on that. Yet, is it the focusing on that that
keeps it in focus?
It is scary when more body parts get involved.
I am now starting my 10th month. My just recent blood work showed my levels to be just about normal. My test was 25 while the upper limit was 21.7. I still think this needs to get lower yet.
Okay, lots of joints, muscles and bone pain. Tingling and burning 98% not there...
Entering my 9 month. More symptoms, especially in arm, hand and fingers.
In both feet lots of activity. Numb toes sometimes hurt, toes right foot constant move and jerk. Sometimes it seems they are working together bit by bit. Cushion is still there but still changing and a lot smaller as it used to be. Some moments in a day, the cushion is total gone.
In the morning every nerves seems to wake up.
Lots of stress, bad sleep. I use melatonine, but not very succesfull. Weakness still there, not every day. Depression, littlebit. Happy for that progress. I work now for 32 hours again, IT FEELS SO GOOOOOD!!
On the 20 oktober I go to a universityhorpital for an examination, second opinion.
Hope to get a diagnose B6!!!!!!! Hope to get back my reflexes.
Hope all of you are doing well.
Someone expierenced with weakness in the 9 month?? Please give a reaction.
I just keep having setbacks and it depresses me all over again. I just started a diet this past week to lose some weight and I stopped taking my allergy medication because it dehydrates me and I wondered if that would affect my weight loss. Something about my new diet or my lack of allergy medication or something is causing me a lot more pain again. Tonight, I started my allergy medication again so we'll see if that helps. My eczema (dry skin) is so bad without the allergy medication that with the super sensitivity that the B6 toxic creates, I'm just in agony. I start feeling like I'll never feel normal again and I get very upset.
I saw it once, way back.
I was dumb, I did not save it.
But there was an medical abstract that tested the secretion rate of vit b6, if vit c was taken immediately after consuming. It said there was a higher excretion rate.
Check with your Naturopathic about this. What can be taken safely to perhaps increase your secretion rate. Megan had success with digestive enzymes. Perhaps that can help?
When it comes to all your crazy symptoms, my guess is you caused nerve damage to more then your sensory nerves. Also your auto. and motor too. JUST LIKE ME!
And you know what, they seemed to be healing faster, perhaps less damage there.
If you allergy pill has antihistamine, there have been articles out there that indicate this is now being offered to control nerve pain associate with PNS. So if you stopped, maybe that is why! You should be able to find it on the net. By the way, one of PNS symtoms (symptoms) include severe eczema (dry skin)! Did you know that. Read that too, recently!
What weakness? Also make sure no b6 with your melatonin. Often made in combo.
My 1 year is on Oct 8.
And right now, believe or not, positive Jen, is a bit unnerved!
I am having pins/needles EVERY INCH OF MY BODY!
Also the nerve shooting incidents of pain, INCREASING!
And my feet are starting to hurt!
So, I am trying to keep my wits about me.
I know it can take up to a year for a damage axon to grow back, and until that has grown back, I believe you will not have full myelin. sheath recovery. And if this is correct, then WHAT THE HECK ARE THE TALKING ABOUT 6 MONTHS RECOVERY!
I found some articles, reading slowly.
Sometimes a little hard for my slow brain to get!
If anyone wants copies, I suggest I get email addresses, then Megan if you want, put them on the board.
First of all, thank you for important sources. Although they contain too much information, they can be step to salvation...I'm trying to set a hypotess, so every information about B6 vitamin important for me. Don't give up your help. Share with me your findings, this is valid for everybody...
I look forward to reading all of the links that you posted on the B6 Toxicity group! I'm so sorry to hear that you're still in pain one year out. I know exactly what you mean about trying to keep your wits about you. It's depressing and frustrating. I SOOOO hope that all of us heal, and stop suffering!
Vardic: my numbness is in spots on my both feet. The big toes have spots were no sense was left. I write WAS... because very slowly, very very slowly, numb parts come alive. This changes during the day. ANYONE THE SAME EXPERIENCE?? PLEASE RESPOND!!!!
Megan: Im feel so sorry for you!!!!! How long are you suffering? How long have you been of B6.
Please, try to keep your head up!!!!!
Yes Heimen, i suppose our numbness are same. My numbness just like not exist this part of my body. They are death. I feel very very little sense. For example, i can feel tiredness in my feet and legs' muscles. There is very slow healing.
You said there is a examination at Utrect University about B6 toxicty. I can come Netherlands and I can contribute as Guinea pig for examination. I'm the most valid example of B6 toxicity victim. Can they accept to examine on my body this illness?
I am not able to introduce you in Utrecht. In Holland, only doctors can intgroduce you, that's the system.
Maybe your doctor can help you. I am very sorry, perhaps you write them a letter??
Always can try!!
Succes!!! Keep up your mood!!!
Since last week, I have had heart palpitations and minor chest pain along with feeling lightheaded and dizzyness while sitting down and sometimes standing up. It's affected me driving a couple of times recently as well. Yesterday, I had a follow-up appointment with my doctor who talked to me about my bloodwork I had done from a month beforehand. I told him of the symptoms I had been having the past week and he told me it was no wonder I was feeling these things because my B6 level was way high and was well over 100 in which I believe the normal range is in the 30's? Plus, my Vitamin D was pretty low as well. I was taking a B Complex supplement along with a multi-vitamin and after reading everyone's stories, I can see why I became toxic. I had been taking these since June of this year. The B Complex had 125 mg of B6 and the multi had 50 mg of B6 as well.
I have not experienced the numbness or burning sensations in the hands or in the feet as some of you have....maybe I caught it in time? I'm not sure, but this has been crazy for me. I've even had 2 EKG's and both came back normal. I have been under alot of stress from work and my sleep has not been good for some time now. If anyone could please let me know of anything that could help w/the recovery process and what I might experience in ups and downs during recovery would be greatly appreicated. Thanks so much for your time.
Your healing will begin, assuming it is b6 when your levels are normal again.
So, what do you need to do.
STOP ALL B6 SUPPLEMENTATION - vitamins, food, everything.
Then healing process is long.
But people here can help some.
You need to take a few days and go back to the very beginning of this chat,
and read up.
There is a lot of advice and experience here.
Prickiling, burning, stabbing etc. happens during healing -- SORRY!
But you can heal.
It just takes tttttttttttiiiiiiiiiiiiiimmmmmmmmmmmmmmmmme.
Get professional and psycho. support if you need it.
I would think a low Vit D is not good.
Perhaps you need to check on this.
The most important thing, read all the chat/board.
Thanks so much for your reply. So, if I understand correctly...I will experience the prickling, burning, stabbing etc. during the healing process? I was thinking these were other symptoms while becoming toxic but I guess I misread some of the other posts. I'm so glad I found this forum...I never even knew B6 toxicity even existed and that it could cause so many problems. As far as the vitamin D, my doc has me supplementing with it now along with Co-Q10. He did more bloodwork on me yesterday and will be going back next week to find out the results....he was wanting to check some other things as well. Again, thanks for your reply....I really appreciate it.
I hope I can make you feel a little better. I had a blood value of 90 with an upper limit of 23.
I initially had heart palpitations, chest pain and a lot dizziness... These were my toughest
symptoms. I also had burning, prickling, and some pain. I think the heart and head stuff might
be a little better now, and the burning and tingling too. Yet, I have and am experiencing a lot
of muscle and bone pain now.
So welcome to the forum. There are a lot of good people here willing to help. Why this happens we can only speculate to this, but Jenn is right to stop taking all B6. You might question anything that goes down the hatch that isn't whole organic food at this point.
I hope that you knowing that I had the same symptoms that you are talking about helps.
Hi Brian and welcome to the forum. Glad to hear that you have a diagnosis. It took 4 years for me to get one. I think the sooner you get a diagnosis and STOP ALL B6 SUPPLEMENTATION and be sure you are not taking any meds with pyrodoxine, you should be able to recover quicker, at least I hope so.
As Jen recommended, read as much of the posts as you can to get a good understanding of what is happening to you.
This is a complex and very misunderstood condition and affects us all differently. As for me, I have never had any chest pain ( about the ONLY place that isn't hurting). Much of my pain is located orally, head, hands, feet and sporadic places all over.
Dr Andrew Weil recommended to me to take Fish Oil - Omega 3 DHA, acetyl L carnitine with alpha lipoic acid, and methyl B12 the sublingual form. I really believe it is helping me. But the healing process is so slow and difficult. You may feel worse before getting better. Drink alot of water and watch your diet. Certain foods have high levels of B6.
More importantly, you are not alone. We are here to help you get through this and believe that you will make it. Take each day, one day at a time and rest as much as you can. Some experience extreme fatigue.
Let us know how you are doing. Hang in there! :-)
I have all of these symptoms and have gone from doctor to doctor with no help.
I have donated over 100 viles of blood in the last 18 months to no avail.
Summarizing blood work for another appt today, I stumbled upon B6 toxicity.
Most docs assumed all B's are urinated when excessive.
I have burning in legs, arms,
teeth and gums (I have chipped enamel from clenching at night, now use plastic night guard)
sore joints all over, hands, ankles shoulder
breast muscle electrical activity (weird to describe)
twitching all over body which awakens me.
I have had tons of blood work in the last 3 years and no docs, even neuro's checked b6, only b12 and folate (b9).
I am desperate to get better and did notice the ever spreading nature of the neuro problems, just when one gets better another symptom appears.
I stopped B6 two days ago so I have miles to go. Got tested today. Inflammation markers are all normal.
I see 6 mos to 1 yr and pray this will be me. My family is sooo upset, and can see me writhing to get some sleep and
Welcome to the forum! Be sure you are stopping ALL supplements of B6 and pyrodoxine.
I even told my pharmacist to be sure I am not prescribed anything with pyrodoxine.
I don't have to tell you, if you have read most of the earlier posts, that it is a long, long road ahead of you. No one here can tell you when you will start seeing any improvement, because we are all different. We have take alot of B6, for a short period of times and some of us have taken small doses for long periods of time. We all suffer differently.
But the good news is, you will recover and get your life back.
It would truly benefit you to read back to the beginning to get a good understanding of what is happening and maybe what to expect as recover.
Are you working? Do you exercise?
It is my understanding, (AND CORRECT ME IF I AM WRONG), but donating blood doesn't get rid of the B6 because it is excreted through the urine and is stored in our nerves and tissues, if I am not mistaken.
Just listen to your dr and I find most naturopaths have a better understanding and treatment plan for this. Let me know if you are interested.
Hang in there! YOU WILL MAKE IT!
I just read your post about teeth and mouth neuro pain and I have the same thing. It is quite disturbing.
I saw your post was from February on a parallel forum.
I have read all the previous on this forum before I signed on.
I hope you are better than the excruciating situation from February. I take strength from any positive progress from my counterparts on this forum who are months ahead of me in their detox. I can only assume for now this is the problem for me so I have put the link to low B6 foods in an earlier post. Unfortunately chicken, turkey and beef are all fairly high as foods go.
I too have been to at least 10 doctors of all kinds and more appointments in the next month. They want to do invasive testing like spinal taps and die contrast MRI's which I refuse. I would see toxic die making me worse and I can't risk that. Then they get indignant and ask me how they can help me. When none did a B6 test until I asked for it yesterday at my primary care doc.
Anyway, I truly hope you are getting better and I will hang in there looking for a brighter tomorrow. I pray for everyone to get better.
hi Susan and everyone, thank you all so much for your lovely helpful posts!
Anyway I may be one of the lucky ones as I caught the neuropathy symptoms after 8 weeks due to the bottle of magnesium supplement i was taking having a hefty dose of b6 in it and the TGA insisting it carry a warning about the possibility of overdose so I was aware and managed to join the dots (although the limit they have listed is too high derrr obviously or i wouldn't be here!) Stopping the supplements worked very quickly days to weeks to be symptom free but I still can't take even 10mg. Tried a berrocca today > numb right hand > run to google and that's how i found your forum!
Any way to add my 2cents:
1. my toxic limit was from only 60-130mg daily from Cenovis multivitamin for women, berrocca and MAX (both contain around 60mgs a serve of b6; i didn't take the MAX every day and i didn't take the twice daily serve they reccomended so i stayed with their reccomended dose the whole time)
*numbness of back of hands increasing to pins and needles occaisionally.
Symptoms are worse on the side i use most Right. Sometimes only on the right hand which delayed diagnosis.
*I had a cervical disc problem so those I'm with those who note it is worse on site of old injury may be correct. I now think the intermittent neck pain i was ascribing to this not healing are b6 related - definitely waxes and wane with the hand symptoms ( no hand symptoms with the original disc problem ) # If it is it was an earlier symptom than the neuropathy #
*One episode of intense 'stocking' distribution burning pain ( incidentally just after i applied progesterone cream) Late symptom and the one that made the answer click
*Probably joint popping too as this has increased out of sight although it's not painful yet just annoying ( i have OA and wasn't going to make much of noticing this as my finger joints which are why i started taking the supplements are so much better like 99.9999% I was ascribing it to starting 'bikini prep' again until i read all your posts :)
3. what makes it worse/better
*hot baths and showers - before bed and wrap up warm
*magnesium helps a lot
*microcurrent therapy is awesome! Took several hours to kick in but one session lasted a whole week and this was while i was still unaware of the diagnosis. I'll book another session and report back
*I think bone soup helps
*I think calcium phosphate is dreadful but I'll have to retest that when the symptoms i got today have worn off.
*got major symptoms funny enough exactly when i stopped taking milk thistle and lipase supplements on my course of CMO (cetyl myristeolate) for arthritis and began using a progesterone/estrogen cream. So maybe kick starting liver enzymes and eating digestive enzymes kept a lid on it and hormones make it worse fast?
*Qi Detox tea seems to help. Anyway it's a bit better and not worse.
*adding milk thistle
Dreadful how half of you seem tohave got here via a doctors office! Me - I have no one else to blame :) well sort of - so I have reported it to the TGA ( our version of FDA ). She has fielded at least 30-40 similar and says that anything over 60mgs is now prescription only in UK.
www.nrv.gov.au/nutrients/vitamin b6.htm reccomends only 50mg as the tolerable upper limit daily - the bioaccumulation can take some years to cause symptoms according to their research. Unfortunately that info was well buried and not on either of my supplement bottles!
Cenovis are fail - they weren't interested in upgrading their label. Spread the word. Save someone.
best wishes to all
sorry it is 50mg daily in the UK (not 60) half your US dose and that's still what nearly 3000% of the RDI
read the debate prior to them shutting OTC higher dose down
Wow! I was beginning to think I was the only one suffering with oral, teeth and gum pain.
Is your pain constant and burning? I get a little relief from sipping on ice chips, maybe you can try that for your pain.
I think that things are beginning to change but I still haven't improved a great deal yet.
Much burning, stinging and numbness everyday. Very frustrating!!! It is the nature of the beast. I take supplements and I think they are helping.....slowly, but helping. Now I am dealing with inflammed gums, they are beet red and I can't brush them, Extremely painful. Have you had that?
When did you get your diagnosis? My levels were 139.
Going over your earlier posts, I think our symptoms are very similar. I was only taking a children's chewable vitamin when I started developing symptoms.
Let me know what you find out about your tests results.
Hang in there!!!! You will make it!
We are here for you to help you through this and pray that you will be feeling better soon!
I stopped taking B100's (a B complex with 100mg of B6) about one year ago after finding out my levels were at 127. Three months later, I was down to a 26. I have had symptoms for over two years and have similar stories to the rest of you - multiple doctors, multiple solutions, none of them worked. MRIs, physical therapy, LOTS of lab tests, nerve conduction studies, EMG. I've now been referred to a neurology specialist to see what he can find out.
My symptoms: tingling in face, arms, legs, hands, feet, both sides; shooting pain, numbness in fingers on left hand; sometimes I vibrate - best way I know to describe it - like my cell phone is on vibrate and someone is calling me - randomly throughout my body; for a time, I was tripping/stubbing my toe all the time - this is gone now; for a time, my right eyelid twitched constantly - that has disappeared
The neurologic community is leaning towards MS (though they haven't been able to prove it). My nerve conduction study and EMG showed NO NERVE DAMAGE. Is that possible? Obviously my little nerve endings are very unhappy.
Two months ago I started an immune calming diet through Signet Labs called LEAP. I'm working with a registered dietician (after an extensive blood test). Many of my ailments have disappeared with this, but still I tingle. In fact, sometimes it's worse. I'm very encouraged to hear that worsening of the symptoms can indicate healing!!!
I stopped my B6 supplements last Nov 2009, except for a relaspe for one month when I was taking something for nerve healing that had small amounts of B6. I stopped that one a month later.
Today, I take: fish oil, acetyl L carnitine, methyl B12, magnesium, Vit D-3, calcium and occasionally Vit C and melatonin.
PLEASE NOTE THAT I HAVE THOROUGHLY READ THE LABELS ON EACH BOTTLE AND THERE IS NOT A TRACE OF VIT B6. MY QUESTION IS THS: IF THERE IS ANY AMOUNT IN THE BOTTLE, WOULDN'T IT HAVE TO BE ON THE LABEL?
For example, I took Bragg's Apple Cider Vinegar last year and didn't know it had B6 because it was not on the label, but when i researched Braggs on the internet, B6 was listed as an ingredient in the vinegar and the amount was not given.
We need to be careful what we take, even if we have to research on the internet because you get more info about the product than you would reading the ingedient label at the store.
Does anyone here take any supplements? If so, please share with me what kind?
Hope everyone is feeling better today!!
Smile.................We are going to make it! :-)
"breast muscle electrical activity (weird to describe)"
Tell me about it!!! I've been living with it for over 3 years now. SO frustrating. I even had a significant breast reduction surgery hoping it would go away. In my case, it is the pain that you feel when your arm or foot falls asleep and then you move it again. I always say it's like someone's driving hundreds nails into my chest with a hammer or nail gun. Very very tight compression seems to reduce the pain, for me.
Foods: For some reason, beef doesn't cause me pain, even though it allegedly has B6 in it. Even if it is medium rare, it doesn't bother me. Generally, cooking is supposed to remove some vitamins, but I have not found that to be true. Cooked potatoes and cooked bananas still cause me tremendous pain. I recommend taking digestive enzymes with each meal. I have found that it somehow allows my body to process B6 better and I'm not in nearly as much pain. When my pain was at its worst, I only could eat: beef, dairy, eggs, honey, chocolate and berries. Be careful of the chocolate though. Pure Hershey's was fine. M&Ms, Toblerone and others contain a lot of soy lecithin which is loaded with vitamin B.
My EMG tests also showed no nerve damage (except in my wrists, which I had years before the B6 toxicity because I am on the computer all day for a living).
I've consumed things that didn't list B6 on the bottle that caused me pain. For example, the vitamin C that I have causes me pain. My best friend works in a laboratory and has a lot of education in the pure sciences. She told me a bit about vitamins and that they are held together by what is called a "resin" which just means "other stuff to keep all the vitamins together so that it can be in a solid form like a pill." So the bottom line is that when you take a pill or a vitamin, it's not 100% only that vitamin. There's other stuff in there, glue, if you will, and that can have other stuff in it. I suspect that the resin in my vitamin C contains small amounts of B6. I suspect that some brands don't, but I'd probably have to try many brands to get one that didn't affect me that way, so I just save my money and don't take any vitamin C.
For a while, especially during my first pregnancy, I took a brand of vitamin called Venistat. It has horse chestnut root in it. It caused my B6 pain to be over the top excruciating. I could never find out if horse chestnut root had B6 in it, or if the pills did. I just had to stop taking them.
For supplements, I occasionally take iron, calcium, B12, potassium and magnesium.
To answer your question, I originally stopped taking B6 in April of 2008. But I had always wanted more than one child. I didn't want to wait for the B6 toxicity pain to stop because I wasn't sure if it ever would or if I'd still be able to have children when it finally did, so my husband and I decided to get pregnant again a little over a year ago. In July 2009, when I found out that I was pregnant, I started taking a prenatal multivitamin which is loaded with B6 (which is what caused a lot of my toxicity to begin with; I got it in my first pregnancy). I took those vitamins for 12 weeks and immediately my pain was very much worse again. I stopped taking any vitamin B6 for the last time about a year ago. I think it was about Nov 1, 2010 that I stopped taking it.
I started a diet two weeks ago called the HCG diet. I made sure that the HCG I was taking didn't list B6 on the bottle. However, it started causing me tremendous pain again. I'm not sure if it's just because the HCG is hormones and somehow that affects my pain, or if there was B6 in it. But it has been another setback. I'd say that I'm in the same amount of pain that I was in 5 months ago, so my healing has been set back again about 5 months, I believe!
Yesterday had my big examniation in University of utrecht. Took 15 bloodamples, more than one hour examination. My body seems to be oke, except for bad achillesrfelx in right foot. No loss of strengt in the muscles, no atrofy from the muscles. I am very happy with that.
All the prickling all over the the body, they cannot explain that. They cannot say it is B6 toxocity, they don't exlude it either. I can take for more than a year before changers are there, they told me.
In december I have to come back for a new test of nerves and muscles, I also get then the results of blood- an urine test.
It is not know how long the B6 vit stay in your body, two weeks, 6 months, a yeart? Scientists don't know. Bloodsamples must give the answer.
So I have to wait until december.
I've heard good things about the HCG diet. Very sorry to hear it's giving you so much trouble.
Look into the LEAP immune calming diet done by Signet Labs. This is not a diet for losing weight (though you will), its for calming down your immune system and repairing your intestinal walls, and detoxing your organs. Amazing things have happened with my health through this diet. Many of the foods I was eating were leaking through my gut and being attacked by my immune system - causing me many problems! Identify and eliminate these foods, get better.
I've recently started on digestive enzymes on the advice of my dietician. My right arm/hand tingles seem to be improving. Makes me wonder about the relationship between B6 and certain enzymes.
Hope everyone is getting better. I have recently got my B6 result and it has came down to 24 (it was at 186 a month ago). Normal level is under 21.7 I guess. My condition is improving very slowly and it has taken a weekly pattern of downtrun. I feel really bad for 2-3 days a week and then gets better for rest of it. It has been like that since last 1 ½ months.
Whenever I feel bad, all my symptoms get intensified. More pain in joint and connecting tissues / muscles, more joing popping, more muscle twitching, and either diarrhea or loose bowel movements. When I feel good, all sysmtoms gets mild and I get constipated. Tingling has gone better but now I feel some burning sking sensations on various parts of the body.
My doctor (rheumatologist) has given up and says that he is not sure about what may be wrong with me. He says that my blood has positive levels of Anti-Smooth Muscles Antibodies and DNA Antibodies; which indicate that there is some kind of auto-immune disease going on. But he is not sure what that is. Because there is no other indition in the blood that could point towards a confirm diagnosis.
My question is, how can I make sure that it was B6 which caused all this trouble and not anything else? Though the level has came down a long way, could it still be the problem? Please note that I have a history of Vitamin D defficiency for last 3 years that has recently become normal. Rehumatologist also made me try high dose of Prednisone (60mg for 3 days, 40 mg for 3 days, 20 mg for 3 days and 10 mg for 1 week) but that didn’t help at all. Still he thinks that it could be an inflamatory condition.
My elbows and writs hurt a lot now I couldn’t work anymore and I couldn’t drive my car even can’t hold cup of tea for more that 30 secs.
Another question is, I was told by my doctor to try Gluten Free diet just to see if it helps or not. I looks like it didn’t. Did anyone else try it? If yes, did it help or not?
I am goint to see nutritionist next week. Any suggestion for that? What are the non-obvious points I should discuss with her?
I would really appreciate your help. May all of us get well soon.
Wholesome foods did not make a difference for me.
The suffering was till great.
The only thing that caused significant discomfort was when I had potato chips!
Otherwise, I suffered no matter what I ate.
So, I just ate everything, in as healthy manner as a could, a FULL and COMPLETE DIET - Meat/Fish/Veggies (Cook and Raw)/Fruit/Dairy Kefir/Beans/Nuts.
Followed a more Anti-Inflammatory diet, because it is an inflammation issue too.
I am now just over a year.
I am DEFINITELY BETTER, but still get issues.
I just don't think food made a difference in my discomfort and suffering.
It is something that I just had to grin and bear.
AND IT IS AWFUL.
It changes constantly!
This change of food intake, digestive enzymes, and possibly the chiropractor have made a big difference in my overall symptoms (including the B6 tingling and pain).
For instance, my immune system was attacking corn, pineapple, soy, rice, cocoa, vanilla, cheddar cheese, and others. An unhappy immune systems creates inflammation which makes other inflammatory responses worse. I've eliminated these and other foods, my immune system is on the mend, and I've lost two clothing sizes (a 10 to a 6). Not because I've lost a bunch of weight - my reduction in size is because of reduction of inflammation!! My migraines are gone, my sinus problems are gone, my muscle aches are gone, my joint pains are gone. I'm waiting impatiently for my tingling/spasms/vibrations/shooting pains to leave.
Hi! Just read your post. Could you tell me what brand of digestive enzymes you take and what other foods you have eliminated? Glad to hear you are doing great. Hang in there!
DOES ANYONE WITH THIS TOXICITY HAVE AN ANNOYING SOUND OF CLICKING IN AND AROUND YOUR TEMPLES WHEN YOU TALK. I HAVE HAD THIS FOR 2 YEARS AND I DON'T KNOW WHY. COULD BE SOMETHING TO DO WITH ABNORMAL CONDUCTION OF THE NERVES, IT IS SO AGGRAVATING. IF YOU HAVE THIS TOO, PLEASE LET ME KNOW AND IF YOUR DR GAVE YOU A REASON FOR IT.
Thank you. Hope everyone is doing better.
Jen, how would you rate your pain level and overall healing from exactly one yr ago when you stopped the B6? From a scale of 1-10, with 10 being the worst?
Do you think you are more functional and feel better than you did a year ago?
Like you, I haven't noticed that foods made any difference.
Everyone hear me....my reactive foods are not everyone's reactive foods. You must have a blood test to determine what your body has trouble with specifically.
I take Premier Research Labs Quantum Digest digestive enzymes. This brand can only be ordered by a practitioner (both my chiropractor and my dietician can get them). I believe you can order them online as well.
I took B12 in huge doses by injection for a week (even after testing over 4000 for B12) but my tingling and pain got worse, so my doc took me off the B12. Now I'm wondering if the worsening was actually healing!
I enjoyed reading several articles on this website - seem very thorough.
wow - the majority of the B vitamins in my tablet were the inactive forms - thiamine, b12 folate as well as the pyridoxine. no one seems to pay any attention to this yet in australia!
Has anyone tried p5p form after stopping pyridoxine?
"Wobenzyme" ordered - was going to try this for allergies anyway otherwise waiting for my blood tests tomorrow
Thorne research has a nice selection of active b vitamins including a b6 free 'neurochondria' support formula
does anyone use this or think it might be worth the expense to try it?
I also came across Hans Nieper's "membrane complex" 2AEP Calcium, Magnesium and Potassium at iherb which he used to treat MS
Again has anyone used any of these products?
Taking just on fishoil and magnesium and getting just a bit of numbness on the right now and then ( neck ache gone)
Susan I stopped b6 in Oct 2009.
And the discomfort and symptoms grew.
It got MUCH worse, not better over the first months, then around month 7/8 I started having more periods of very stable, more mild symptoms, with also some symptoms improving or on disappearing over this time (anxiety, sleep problems, heart palpations) and others appearing over this time (eye flakes/neuritis of some sort, ringing in the ears, popping/cracking sounds). As you know, putting an exact time table on anything is literally impossible.
BUT if I was a 10 at 6/7 months, i would say RIGHT NOW I am at a 5, perhaps even approaching a 4. The 'symptom' flare-up I just had is slowing now, BUT THE RINGING IN THE EARS is driving me batty, especially at night.
The symptoms will change. For me I moved from pins and needles, to prickling, to stabbing, to burning sharp nerve pain. ALL OVER! Slowwwwwwwwwwwwwwwwwwwwww, uncomfortable, but always changing. Plus everything else!
At the same time, more periods of relief.
I think this is a bit confusing! Sorry...do you understand?
Thanks for telling me about the LEAP diet. I'm looking into it now. I do have a ton of environmental and food allergies, so I'm interested in hearing more about this.
Did you need to have a Dr prescribe these blood tests?
I did try a gluten free diet. My Dr also tested me for Celiac's disease and the results were negative (I do not have it). I am able to eat gluten with no more issues than eating anything else with the same amount of vitamin B in it.
I've tried a ton of digestive enzymes. The ones that work best for me are by a brand called Nature's Plus. They just say "Digestive Enzyme." I order them from VitaCost.com and they ship them to me, but you can also find them at Vitamin Cottage. Here's a link:
I've taken some of the ingredients in them by themselves (pancreatin, HCl, Papain) and they didn't make a difference. By process of elimination, I think it's the Malt Diastase that has been helping me but I can't seem to buy that on its own.
Go to LEAP's webpage www.nowleap.com and click on "Free Patient Prescreening" in the upper right corner. Fill out that form, and I believe a certified, registered dietician will contact you and take you from there. You can go through your doc, but you don't have to. The dieticians that work with LEAP are fully trained and work with a doc at Signet Diagnostics to order your blood work. My insurance covered the cost (after my deductible). Cost was $500-$600 for the blood test, the results, and three consultations with the dietician. I wish I had known I didn't need my doc because my doc is also charging me to see her through this process at $150 per visit!
So....$500-$600. This may seem high to some, but I'm definitely feeling $500 better than I was. AND, this is definitive lab results, not guessing that this or that might work.
Is the diet helping my B6 symptoms? Not sure. Is my body acting more like it was designed? Absolutely. I figure that everything I can do to get more "normal" helps me all around. That said, I've been working with this food plan for just over two months, and in the past two months, I've seen B6 symptoms improve.
I hope every is doing better.
I am just wondering if anyone else is having IBS (irritable bowel syndrome)? I don't know if it is related to B6 or something else, but i am having weekly pattern of constipation and diarrhea.
What is the reason of having muscle twitching and joint popping? I mean how does B6 cause them? Moreover, has anyone's doctor attributed these symptoms to Fibromyalgia?
I believe the muscle twitches are from damaged nerves in the muscles due to the B6 toxicity. The nerves are not firing properly, are raw and are easily stimulated to fire for a myriad of reasons when the myelin is missing.
Since many doctors including mine haven't heard of this, they call the soreness and the pain that comes with this fibromyalgia. Instead of attributing this to nerve damage like I'm sure it is. I have these too and they are disturbing. I think they go away and then they come back a week or days later. Also the muscles don't relax after contraction and stay knotted a after contraction.
Anyway, that's what I believe from my experiences. I could be wrong but I have analyzed this forever.
I was told by one dr that the cause of the joint popping, cracking and snapping could be B6 related and it is called abnormal conduction of the nerves. I have this clicking in my head near my temples when I talk, sip coffee or sometimes just turning my head. It is frustrating, plus I have it in most all of my joints.
I have been on a gluten free diet or at least I have tried to eat mostly gluten-free but I have not seen any change. I am going to start taking digestive enzymes and see if it helps like it seems to have helped alot of people here on the forum.'
Hope you all are feeling better :-)
This website is sooooo helpful as I recover from my B6 toxicity. I've been off the vitamin for 7 months now, and my tingling & twitching is definitely not as bad as it was - still there, though.
I have two questions for anyone with thoughts on the matter:
Do statins affect peripheral neuropathy? My doctor has recommended a low-dose statin for me and I worry about taking any meds.
Also, does anyone think accupuncture might help with the twiches and tingling?
Thank you for this wonderful website, which makes us feel we aren't alone with this problem. Many people, including even doctors, think I'm nuts when I talk about B6 toxicity. Gratefully, a respected neurologist at Scripps La Jolla diagnosed my problem, so at least he knows I'm not crazy!
Okay, I know I sound like a broken record, but the main items that the LEAP program treats is IBS, Migraines, and Fibromyalgia. Most of these symptoms are caused by the foods that we eat and our immune system's reaction to them.
www.nowleap.com (look at my Oct 26 post)
Changing your diet can make these ailments go away. Yes, I was a skeptic, too. I refused to try it for over a year. Now I'm kicking myself for waiting.
I went to Univ of Texas Southwestern Medical Center today and saw their top neurologist. The good news: I don't have multiple sclerosis and I don't have a degenerative nerve disease!!! The bad news: Even experts in the field have no patience or concern for B6 toxicity. I was told that I had neuropathy (really?!?), it might persist, it might go away. Don't take B6 anymore (you think?) I could do nothing to help my nerves regenerate - they either would or they wouldn't. And that vitamins, supplements, and digestive enzymes would do nothing to help. This was even after I showed him a detailed food & symptom diary proving that my tingling improved 30 minutes after taking the enzyme and worsened 1-2 hours after that. He said there was no reason for the enzyme to help, therefore the enzyme didn't help. No offense, doc, but I'm going to keep taking it!!!!
Hang in there, friends. And look into this immune system/food reactivity stuff.
Thanks a bunch for your replys. I really appreciate that.
Fruitcake4him, I have already seen a dietician to rule out any food allergy and to figure out LEAP diet plan. This may take couple of weeks before I would get the first round started. Thanks for your help here and I hope that it would at least give me a relief in pain.
My rheumatologist wants me to see a Fibromyalgia specialist cause he thinks that i might have it. I may see him next month; though i am not convinced that it could be Fibromyalgia.
Hope everyone will get better soon.
Hello everybody, two weeks ago I was in the University of Utrecht in Holland. There are lot off doctors, neurologists and professors in that Univerity, examining neuropaty in relation to B6 toxicity!!!!!!!!
They are aware of the awfull and poisonous character of B6. So if your doctors don't believe in this story of b6, let them read there literature from Holland.
There is a lot of good scientific stuff on the internet!!!
I am very happy with my examiniation in this Universityhospital.
In my case, they cannot say that b6 is the reason for my neuropaty, but they did tell me, that there is a big chance!! Time must learn if this will be true.
There is not much you can do to cure damaged nerves, but please, PLEASE stop using lots of vits from the B family. Because they all interfere with each other. Give your body and mind some rest!!!!!
In this hospital they couldn't give a clear explanation for the prickling all over my body, nor could they tell me about plopping loints.
One of the doctors was very honest: she said, we don't know much about this disease, but IT EXISTS!!!!!!!
Hoping for better times, because my numbness is not leaving. I am now in my 10 month after stopping and still have a lot of symptoms.
Good news is that there is probably not much damage, because all my reflexes are found back, except the right Achillesrefl. This is still disturbed a bit. maybe the refelxes are cured and came back.
My ataxy is gone and the Rombergtests and Vibartionterst was positive. It all works still properly.
No musclesdamage, no atrofy of the muscles after 4 years of neuropaty!!
8 dec I must go back back for the second EMG-test and receiving the result of the huge bloodtests they took, 15 samples.
Sleep is better, depression left, working again for 30 hours in one week. Feels very, very good.
Are there cured people on the forum who can teel something about symptoms which got worse first, before leaving? Please write down your experiences.
Your news are good. Beside these, I want some requests from you. I'm trying to find answers why i lost my senses, why i have numbness in every part of my body, but i can't sure my teory. There is only a one person who believe me he is my psychiatrist aware about B6 vitamine affects.
I request from you, if you go at Utrect University over again, please mention about me. Tell them, after high dosage usage of B6 vitamine, a little change feelings( increased pain and tiredness...), but after usage of anti-thyroid drugs, lost every senses; ataxia, numbness, mental stagger have been occured.
I'm %99.9 sure that my toxicity is related to relationship of B6 metabolism and ATP metabolism. There is a lot information in my hands. My toxicity occured in my brain areas( which one I don't know basal ganglia, thalamus or others). My neurotransmitter balance changed, but I'm not sure.
There is no real doctor in my country that i can tell my situation. They are saying your EMG is normal, your problem is psychological. I can freak out. Nobody didn't understand me. I have a break my university. If i turn back normal again, what can i do in my life? How can i live like this?
Please tell me to them, if necessary, i can come Utrect University. I can say that If the solution exist in Mars planet, I strike out without loss of time.
Is there anybody can help me? I'm the at the end of the way. I have to find where is the damage? What can I do I don't know. There is no problem that haven't a solution. It must be a person can help me. I don't want to pay bill of stupid doctors. How can I still alive 14 months without lots of sense? It must be an end of this ********. It must be a solution that i don't know
I went to get accupuncture today and got some relief. It has been a bad, bad week for me. It seems as though my neuro pains intensified, as well as the burning, tingling, prickling, popping, stinging and numbness! WHEW! (Did that cover everything).
I have been going regularly now for 2 years. He told me that my liver is toxic and there are other issues he is trying to correct, but he feels that the B6 problem has to do with our bodies are out of whack and producing to much heat. And there are inbalances. It is hard for me to explain, all I know is that I feel so much better after treatment and it is something worth trying if you are interested. If you are, BE SURE THEY ARE LICENSED in your state or country. That is necessary to avoid getting with someone who took a weekend course and overcharges you. The good ones are hard to find. Ask around.
I still have terrible issues with my ears, DOES ANYONE HAVE OR HAD PROBLEMS WITH YOUR EARS AS YOU WERE IN DETOX?
Let me know........
Hope everyone is having a better day :-)
Since I have many (practically all) of these symptoms and I had B6 tested recently, does anyone have the lab reports for their test which details normal range for the blood concentrations?
I was under the impression that the top of the normal range from Vardic and others was somewhere around 18-21 ug/L. My labcorp report says a normal range is up to 46 ug/L so my doctor once again thinks this is a non issue for me and not causing my millions of symptoms from (as Jennifer said) the top of my head to the bottom of my toes.
My levels were first messed up by the doctor not collecting the samples properly. Then a week later I went to labcorp for second test and just got the results.
I have done a bunch of google searches but they are all worthless and just discuss that toxic levels can be harmful as we all know but no reference ranges could be found.
Thanks for any web links or lab report reference ranges to help me understand where I stand and I truly pray we all recover very soon. Again labcorps reference range is 5.3 to 46.7 ug/L. That seems high to me for normal based on what I've read so far.
Read your posts. You are NOT crazy. It is NOT in your head. I am glad to hear that your psychiatrists believes you,,,,,mine STILL thinks its psychosematic.
You know your body better than anyone else. You have B6 toxicity. There is not much you can do about it, if you have read all the other posts.
It really does take time,,,,a long, long time. As for me, I feel worse now than I ever had before and still developing new sensations. I am only in my 6th month.
If you can get in to the University hospital that Heimen was able to, then by all means, try.
I went to the Mayo Clinic to get my diagnosis. It makes me mad when I traveled to the University Hospital here where I live and the 4 neurologists I saw NEVER checked my B6, they checked the other B's but not that one. I had to go through this another 3 years before I decided I HAD to do something as I was getting worse.
I am on your side. I know it is hard.
You do want you NEED to do, just don't take any B6 supplementation and in time you should be fine.
Hang in there friend. I will be praying for you too.
The dr at the Mayo Clinic considered anything under 50 normal and anything above that is toxicity. I might add that he also said that a LOW B6 levels causes symptoms of neuropathy as well. I found that interesting!
TO EVERYONE READING THIS THAT HAS BEEN OFF OF B6 FOR AT LEAST ONE FULL YR OR LONGER, PLEASE WRITE AND LET ME KNOW HOW MUCH BETTER YOU FEEL. ARE YOU 50% BETTER OR IF YOU HAVE BEEN OFF B6 FOR 2 YRS, LET ME KNOW IF YOU ARE 75% BETTER OR IF YOU HAVE BEEN OFF A YR OR TWO AND HAVE SEEN NO CHANGE OR HAVE GOTTEN WORSE. I WOULD ALSO LIKE TO KNOW IF YOU DID DEVELOP NEW SYMPTOMS AS YOU IMPROVED OR IF YOU ARE STILL DEVELOPING SYMPTOMS, IN OTHER WORDS, DO YOU FEEL YOU HAVE SEEN PROGRESS AND FEEL MUCH BETTER IN THE YR OR TWO SINCE YOU STOPPED THE B6.
PLEASE TAKE ONE MINUTE TO WRITE ME A QUICK NOTE.
MUCH APPRECIATED :-)
I have been off B6 supplements for just over one year. I have not purposefully eliminated foods high in B6 nor purposefully sought foods low in B6. I tried high-dose B12 injections for eight days and my symptoms worsened significantly (though I wonder now if that was nerve regeneration taking place). My original levels were 143. I stopped supplements and within two months my levels were at 26. I had tingling symptoms for two years prior to stopping B6 supps, so I assume I had high levels of B6 for more than two years. It seems I have been more fortunate than many on this site. I have not had lost time at work (other than for the many dr appts), I have not been in severe pain. My tingling moved up my arms and legs and into my face, chest, and back; I started tripping myself often with my right foot; my right eyelid started twitching; and the large muscle in my buttocks would contract and not release (without persuasion) before a dr recognized/guessed at B6. The eyelid twitch and foot tripping stopped almost immediately. About 6 months after stopping B6 supps, I started having shooting pains and numbness in two of my fingers of my left hand. This persists but is improved (maybe 50-60% improved). The butt muscle thing happens less frequently (maybe 70% improved). The tingling has retreated back to my elbows (down to my fingers), my thighs (down to my toes), and just around my mouth. So I'd call that 50% improved, but it has taken the longest time.
So...one year off supplements with a toxic level for at least two years before that, some symptoms disappeared immediately (100%), some got worse before they got better, and some are very, very, very slowly improving. All in all, I'd say I'm 60% better. I thank God for that, but it's not good enough. I continue to seek relief.
My neurologist offered my a drug to mask the sensation of tingling. I declined. Why trade one side effect for another (or many)?!? We live in a culture of instant gratification and want/expect this to disappear quickly. God (apparently) didn't design our central nervous system that way. The neurologist says there is nothing I can do to help my nerves repair themselves. I disagree. I can do what it takes to make my body the healthiest it can be so that it can focus on all those tiny little nerve endings. I can educate myself. I can take digestive enzymes (which are helping me even though I don't understand why). I can calm my immune system so that it can do the job it was created to do.
Hang in there, sweetheart. You're not alone. It will get better.
PS Liver detox - look into chlorella, turmeric, and colostrum. Buy from Premier Research Labs (they have digestive enzymes as well).
I took B-Complex for 1 1/2 months in total and had my levels at 187 when I was first diagnosed with B6 Toxicity. It has been 2 months since I stopped taking supplement. My level was rechecked end of last month (after 1 month of stopping supp) and it was at 24 (I followed very restricted diet and only took the foods which are very low in B6).
When I first stopped B6, the next day was very good and felt not a single symptom throughout the day. But I started having joint pain again at night. The next day I suddenly started feeling very drowsy. The third day was the worst one and I had sever joint pain with increased muscle twitching, joint popping and weakness in addition to new symptoms (tingling and numbness). Ever since then, I am literally a disabled person who couldn't even hold a cup of tea for more than 30 secs. Good news is that it is getting better though very slowly. I would say it is 50% better than the worst day I had. But still bad enough to keep me out of work (disabled). Tingling and numbness is almost gone I just take Vit B12 supplement and gradually liberalizing my diet (though I would need to restrict it after I get the diet plan from my dietician sometime next week).
Recently, I started the daily use of ground turmeric as it is considered to be very strong natural healing and anti-inflammatory agent. I use a couple of pinches (~100mg) in 1/2 cup warm milk (you can add 1 tsp of honey or mapple syrup for sweetness). This seems helping a bit. You can give it a try, but remember that we all have different bodies which are suffering very differently. So, healing process is distinct as well.
Can anyone explain to me the difference between the nerve pain, burning, tingling, stinging, prickling and numbing sensations that you acquired while taking the B6 supplements and the the nerve pain with all of the other sensations you experience when you back at a normal range and recovering? To me, I can't really tell much of a difference.
If anyone can explain this, I would love to hear from you....ANYONE.
Thanks for the info about LEAP. I have nothing to lose, I think I'm going to try it.
My experience with Drs and discussing my B6 toxicity has been the same as yours. I'm learning that Drs don't know everything. This medhelp board and the messages here have been far more helpful to me.
You mentioned that taking B12 made you feel worse. I've noticed that with me, too. I've stopped taking it but I don't know if that means that my healing will slow.
Fascinating about the muscles. I've been having other health issues, muscle issues (urge incontinence - a constant feeling that I need to urinate, even when my bladder is empty) that I thought were unrelated to B6 toxicity. Tonight, I took a prescription Lyrica for my B6 pain and my other issues seemed to subside too!
My B6 level was 46 when I was tested. But my friend who is a nurse said there's no standard test for B6 levels and that a blood test (which is what I had) would only show the level in my bloodstream, not in the fat cells where B6 can be stored. Another friend of mine is studying at the Mayo Clinic and gave me these links:
I'm thrilled to hear that you're working again and the depression is going away. And also that sleep is better!
I totally understand your frustration! Living like this is miserable. The only thing that makes me feel hopeful is that some days the symptoms are less. I don't know where to advise you to go other than to come here and vent (share your frustrations). If you can get a Dr to prescribe you Lyrica or Gabapentin, it's worth trying. I have had some side effects from them, but it's nice to have some pain relief! Even if only for a few hours. Mainly so I can sleep.
My tingling is pretty much the same now that I'm off the B6, but it's duller. When I was taking B6, my breasts felt like someone was using a nail gun and driving nails into them. Now, if I eat something high in vitamin B, they feel like that, but when I'm not eating, they feel like someone's rubbing sandpaper across them or tickling them with feathers. It's just not as intense.
For those of you with tingling fingers, do you notice it in some fingers more than others? My left side seems to be affected more than my right. And I feel the tingling primarily in my index and middle fingers.
I received my B6 test results back. After a level one year ago of 143, I am now down to 10. Yes, 10. Two months after stopping supplements, I was at a 27. One year after stopping supplements, I am at a 10. I don't avoid high B6 foods. I do not eat wheat, corn, soy, dairy (and a few others), but mostly I am off ALL processed foods. If it doesn't get prepared in my kitchen from scratch, I don't eat it (except for one trusted restaurant near me - they cook my meals separately and to order).
So, my blood B6 levels are looking good. According to meganamy's friend, I also need to know my fat cell B6 levels. Is there a test for this?
Has anyone used or heard of another possible treatment - velvet deer antler?? Traditional chinese medicine uses velvet for strengthening the blood, warming and also reccomends it for lower limb pain
this chiropractor reccomends it with Lcarnitine and some herb i've never heard of centella- http://www.specialist-pages.com/kc_az/pdf/32DH_Neuropathy.pdf
I can see from the thermogram why some of us find heat so therapeutic.
this guy sells it as an IGf-1 supplement with money back guarantee as a spray http://www.velvita.com/igf2.htm IGf-1 regenerates nerves but is only on prescription here because it can cause a lot of serious problems but as deer antler it is ok to take and the litereature summary suggests the whole is better than the parts.
"In studies where nerve cells have been placed in culture tubes, IGF-1 has been shown to have remarkable growth effects on spinal cord motor neurons. It increased motor neuron activity in spinal cultures by 150 to 270%. In addition to this, it significantly decreased the preprogrammed cell death in developing chick embryos. In certain animal studies it had a direct effect in stimulating nerve axons of the spinal cord motor neurons to regenerate. It increased intramuscular nerve sprouting 10 fold when it was given to normal adult rats. According to Swedish scientist Hans-Arne Hannson of the Institute of Neuro Biology at the University of Goteborg, IGF-1 by itself or in combination with other growth
factors, could stimulate nerve regeneration."
."Velvet antler – a summary of the literature on health benefits" prepared for the australian government in 2003 says:
"An important concept that is a common theme of many research papers is that the combination of all components of velvet antler provides a synergistic effect that is greater than the total effect that would be achieved by the separate use of each of its individual constituents. That means that if velvet is broken down into its constituents that are used separately, their combined effect is significantly less than the effect realised when the nutrients are provided in the naturally combined form of velvet antler. In summary, the effect of the complete product is greater than the summed effect of all components.
Literature reviews related to the use of velvet antler products considered for this summary provide persuasive, credible evidence to support the claim that compounds in velvet antler may provide effective and long-lasting relief of the symptoms of osteoarthritis.
Reviews also support suggestions of additional benefits such as relief of some conditions associated with aging, stimulation of the immune system, assistance with growth and strength training and the absence of side effects."
I can get it locally or at iherb or I'm tempted to try in a nice arthritis mix from NZ http://www.nzvel.com/product.php?type=1
The vendors sites don't talk about side effects from antler but it is androgenic, and does actually thickens the blood and increases blood vessel growth, there's potential for influences blood sugar too.
Still waiting for my levels. Just a quick post to confirm what others have said:
1. high b6 in food makes it worse.
Yesterday i ate the last of my vegemite - never caused a problem before when I had just stopped taking the supplements. Obviously it is high in B vitamins and wow this is nearly the worst it has ever been except it's only unilateral now. numb sort of dull pain running right up the nerves of r leg/arm - why only the the right side? must be more damaged :(
2. Supplemental oral b12 cyanocobalamin, folate 400mg, B1 50mg, magnesium phosphate mix from blackmores and a nice HOT bath help.
Much better - numbness has retreated.After re-reading and researching all the helpful posts I decided to try adding those things although I was going to have a B vitamin holiday.
None of those are the preferred active ingregedient type B vitamins unfortunately you can buy on the internet. Was emergence mode - they are just not available in shops here.
Velvet deer antler only is selling on the internet for increasing sexual desire. How much we can trust these uncertified pills especially in Turkey? Also, what is the side effects of this herbal exactly?
I can't find methyl form of B12. I bougth cyanocobalamin from Solgar.
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