This is more of a comment than a question, but I would welcome info from anyone who has any experience with this situation. I took a prescription called Folcaps (which had 25 mgs of pyridoxine in it) for a year. In February of 06 I began experiencing symptoms which have now been diagnosed as Pyridoxine (b6) Toxicity Induced Neuropathy. I did not get this diagnosis until August 15, after four MRIs, several specialists and balance testing. My b6 blood level was 81 - the maximum safe level in this test was 32. When reading about b6 toxicity one reads about tingling hands and feet and being "wobbly on your feet" and things of that nature. It can be much more than that. Be careful with Vitamin b6. It's not known if the neurological damage is reversible. Some studies show it is, some show it is not. The damage I have suffered extends to my thyroid, my blood pressure has been lowered (to an unsafe level - it was healthy before), my balance has been damaged - I don't know where my right foot is in space, I've had insomnia, my symptoms are too lengthy to list here. The fatigue that I have been experiencing for the past several months has started to lift now that I've stopped taking the medication, but it is still profound...another hallmark symptom of b6 poisoning. This is a serious toxic situation and one that is not understood by the medical community. I am waiting to find out how much of my life I will get back. I am rebuilding my stamina & neuropathways with an optimistic outlook. And getting the word out. MD's don't know about vitamins. Work with nutritionists. Don't go it solo
Wow, I had what I think was B6 toxicity about 6 years ago. I was taking a B-50 supplement for a year - that's 50mg of B6. The neurologist had no clue what was going on. Finally I guessed B6, he said maybe, I stopped it completely (that was a rough road), and major changes started to happen in 8 days. It took about 3 years, I'd say, to get to the point where I didn't notice any remaining effect. But I'm still very sensitive to it. I can't yet take a whole Centrum each day (that's all of 2mg) without feeling a little wierd on my fingertips and toes after a week or two.
Anyway, it's a long story. Let me know if you want to know more. Personally, at the time, I would have loved to hear someone else say they'd been through it, and I wasn't nuts. The neuro never really was any help, so the fact that you have one who tested for it is a big plus!
I am so thankful I found this website, and for the individuals who told their stories to get the word out....it has saved my life! In 1999, I went to a Neurologist with several severe neurological complaints. I thought I was possibly dealing with MS. MS was ruled out after testing, but I was not diagnosed at that time, and the Neurologist thought my problems were in my head, and that I needed to see a counselor! :( Finally in 2007, I got the courage up again to go to another Neuologist for help, because my symptoms had worsened, and I was having difficulty walking (long term, extreme B6 toxicity side effect). I decided that this time round with the new Neurologist I was going to be very proactive and obtain all my test results and "analyze" them with the help of info off the internet. To make the long story short, my B6 level was at 73 (normal is 23 for women). I then found this website and others to confirm to me that it was "B6 Toxicity Induced Neuropathy". I explained my findings to my Neurologist, and she still wanted me to go through all of the MS testing because of the evident neurological damage (my reflexes were fried). Yes, MS was ruled out, and the Neurologist did her studying on B6 toxicity, and I was FInally diagnosed properly. The Neurologist also told me that she also had another case that had just come to her with high levels of B6, and she was wondering what was going on with this!?! (A Note to Neurologists: This is a serious problem....don't write B6 off as a water soluable vitamin....it's toxic, and your patients need help!) I have been detoxing for 8 weeks now....and it has been a nightmare. Detox symptoms include (on top of toxicity symptoms!): SEVERE FATIGUE, nerve pain, difficulty walking, intenstinal pain, blurred vision, depression, SEVERE NAUSEOUSNESS, headaches, muscle weakness, dizziness, vertigo, hopelessness, etc. etc. etc. I am using a special diet from a book called "Patient Heal Thyself", which includes a lot of fresh, organic, whole foods. And I have a lot of support from friends and family to walk me through this trying experience. I have lost 10 precious years of vibrant living due to B6 toxicity, but I am hopeful that I'm ready to finally close this chapter, and begin a brand new book in life. Detoxing can take up to 6 months, and 3 years for the nerves to heal. This truly is a serious condition, and I have had too many symptoms to list here from the toxicity. It's a SILENT CRIPPLER, and the funny thing about B6 toxicity is that it is addictive because B6 makes you "feel good" at first, and then when you don't have it, you feel worse, so you "think" it's a good thing and that you "Need" it. Quite a puzzling phenomenon!
I suspect that I have B6 toxicity. I now have nerve damage in my colon which makes it not function very well. I read that it attacks old injury sites and those are the spots that are affected (toes on one foot; bladder; L1 spine). I was on UASA vitamins since July. I tried getting of of them a few times and my gut shut down each time so I would return to them. About eight days ago I stopped again and my colon is trying to quit. Five days after I stopped them, I took a 1/4 daily dose to try to get my colon to work again. Within an hour I had a hot foot with numb toes. I had a burning pain in my calf all night and felt terrible the next day. I have found that I am not so much off balance since I stopped them and am not as weak.
Can you give me an idea as to what you eat and how to detoxify myself.
i'm a C.N. (however, a shadow on the internet so you don't really know, but i am),
and have worked with supplements for about 30 years.
i have taken them for over 35 years now.
i will tell you, b-6 toxicity exists. i am a supporter of taking supplements, but agree,
this one is a cautious one.
i have the problem myself! i have numb toes, mild nerve damage upon EMG findings.
they thought i had maybe ms/als/ something. i have no firm dx of this but, with testing
taking b-6 and not taking it, taking it makes the numbness worse.
studies show most can take up to 500mgs. a day and should be ok, but i'm not so sure
there are also studies showing that over 150mgs. and in a few cases less than 100mgs.
a day could cause neuropathy.
one neuro i saw thought i was in the safe zone, but i'm not so sure.
the suspected reason for the toxicity, is that your liver is overwhelmed and cannot
add a *phosphate* molecule to the pyridoxine, thereby producing the active pyridoxine
5 phosphate. instead, you have pure pyridoxine floating around and it's toxic.
i would love to know the b-6 toxicity websites to check them out.
thanks, hope i was helpful a bit.
I find this very interesting. I was taking Norvasc which I think compounded or created the problem. Do you think that natural B6 would react different than man made B6? I started feeling bad last May. I have been off of everthing (Norvasc include) for three weeks. I feel that I am very slowly getting better but it is a rough trip, very up and down. I am very weak and unable to do hardly anything. I would have never beleived that I could go this low. My doctor thinks I am depressed. He doesn't know the difference between weak and fatigue.
i gotta run for today, but, i wanted to answer.
i kind of don't think it matters, although b-6 from food likely
is fine of course.
b-6 is involved in neurotransmitters, substances such as gaba,
so, this could jive with your feeling down and tired and so forth.
i think that any supplement no matter how it's touted, of b-6,
if it's your cause then it will bother you yes.
hope i helped?
In May of 2007 I was taking a sublingual B-Complex (B12 and B6) when I experienced vertigo. I went to a neurologist who said by B12 levels were 200 and a little low so he gave me a perscription for Cerefolin, a mega vitamin usually given to Parkinson's patients. Within a month I had lost my balance, my reflexes had slowed down. I was suspected for MS. My symptoms worsened, and I was at a point in November that I was going to need a walker. My toes on my left foot became paralyzed, and I needed a bar to balance myself in shower. I'm only 40 years old. My neuro decided to send me to a ALS specialist in Philadelphia. They ruled out ALS, however my symptoms persisted. Meanwhile I ran out of my perscription, and just didn't have time to get them refilled. We'll as each day went by I felt just a little bit better. So I decided to stop the pill without my neurologists permission. Within 1 month I was a slow jog up and down my driveway. I actually cried and was so thankful for being able to do that. I am now 2 months off the medication and can run up stairs again. I am scheduled to go to a hematologist on Friday to figure what exactly my levels are. B-6 can cripple and kill. I wrote the FDA a letter to tell them of the effects I had from Cerefolin. My main concern is that this drug is given to patients that already have a physical impairment and could worsen their condition. Thank God I'm not alone with this.
don't forget, that prescription versions of some vitamin formulas that exist, may be
potent, and often are mixed with fillers that are for lack of a better description, nasty.
however, yes, if the amount of b-6 was high enough, it could theoretically be the cause.
it is a dilemma, because b-6 can alleviate alot of things related to cardiovascular issues,
and is involved in seratonin and so forth, even immunity. so to not be able to take it
is, well maybe not the worst thing but i'd rather see people able to tolerate some.
it is great you are better. i am not with my b-6 issue, but it's slowly working i think.
and being in this field i never had much concern, yet, here i am with you on this.
I've had a sinus bradycardia condition since I was a little girl....I've also experienced tachycardia episodes. This was confirmed at a cardiac unit at a hospital where I tested postive on a tilt test. My heart stopped for 4-5 seconds then restarted. I went to see a hematologist last Friday, as I've already had 6 MRIs and Cat Scans, and am frustrated with my neuro. The hematologist is testing me for Porphyria, which I've never heard of, but it has something to do with the blood not producing a needed enzyme...which can lead to the b6/b12 issues, heart issues and the neuropathy that I experienced. Have you ever heard of Porphyria?
oh yes, i've heard of it. i can't from memory recall all that is involved, but i do follow
you on the b vitamin issues.
i do not believe it is very common. i would have to check into my huge piles of books
on these subjects (they are all over my place!), and re-introduce myself to this problem.
if you get a positive i suppose it would maybe answer some questions for you finally.
i don't know why, but neuro's seem to be alarmingly very frustrating.
let me know if i can help at all.
I had experienced B6 Toxicity ! It was so unexplained for the longest time, when I would have numbness or tingling of my fingers/hands and feet. I would be at the supermarket, at the gym working, training, w/ friends, anywhere... and my hands started tingling and going numb.
My boyfriend said What have you been doing differently that you never did before? Something has now caused this. So I back tracked, and the only thing new was overdosing on vitamins. Bought a ton of Vit A, Vit B's (all of them), Vit C, Vit D, Mg, MSM, Gluc Chondroitin, everything. Found out that my diet was sufficient, and I was getting well over the RDA values for all Vitamins and Minerals.
Stopped taking the vitamins. They are unnecessary, since I get enough from my diet alone. (go to Fitday.com, enter your diet, click on "reports", and it tells you the RDA values/Vitamins and Minerals you are taking in). Since then, the numbness and tingling has stopped. Thank god !
I too had a bout with B-6 overdose when ingesting 200-300 mg/day for a mild case of carpal tunnel. My symptoms were not as serious as others mentioned here since I was on them for less than 2 weeks, but it was scary and did mess with my thyroid, heart, intestines, and I had vertigo in addition to numbess, pain and tingling. I think I was toxic this quickly due to some kidney impairment. Anyways, I am very glad to hear other sufferers are recovering. I myself feel somewhat better a month later, and recommend acupunture for nerve compression, not this vitamin. Moreover, I don't know if the vitamin prod. company does an accurate measuring job since their vitamins supposedly are 90% wheat gluten with the remainder pyridoxine. The worse symptoms are better, however my dreams are still rather vivid and unforgettable. Does that also subside? Eric Nissani
Just some additional remarks after rereading these blogs. I think staying off caffeine and sodas helps detox, as well as avoiding spinach, salmon, eggs, carrots, peas and potatoes (high in B-6) helps. Also, eating frequent small meals helps intestines normalize from B-6. Sleep with your head elevated to minimize blood pressure or heart problems, and try to do a lot of walking, meditation, stress reduction, and non-vigorous exercise as well as rest. Some have claimed wearing loose shoes is good for nerve damage in the feet. Test for thyroid problems, and be careful about ingesting any other drugs or vitamins. I took aspirin for a few weeks after I had some bad heart palpitations (slept with my head too low after drinking black tea) however I think in the long run nerves heal best drug-free and so I have eased off the aspirin. Eric
Wow, it is helpful to read your experiences. I have suffered vitamin B-6 toxicity twice in two years. The first time I was on a high dose sublingual vitamin for PMS symptoms. I started having tingling, numbness, burning pain and doctors thought all the usual pathology like MS. I had MRI, blood testing, ect... and the only thing off was B-6 levels were 136! I went off the vitamins and then found I was pregnant. It took about six months for me to become "normal".
then, during my postpartum, I started taking a low dose prenatal vitamin b/c I was feeling that nursing was draining me. With a couple of months, all the toxicty symptoms came back but worse this time. Probably b/c my nerves were still healing from the first time. I had no idea that such low levels of B6 would cause problems. And it effected my baby. He had terrible sleep issues, probably insomnia due to too much B6 in my milk. this time my blood levels were 125.
I went off all vitamins three months ago. But, i am still having so much pain and sometimes weakness. It is difficult to sleep and lugging around my 23 pound one year old can be challenging. I worry that there is something else wrong but it sounds like the healing process can be painful and take longer than I thought. I miss exercise so much! I went to a pilates class yesterday and last night, the aching pain in my nerves was almost unbearable.
I am learning about patience!
Any ideas how long this healing can take?
My boyfriend got B6 toxicity from just taking a B-Complex vitamin daily. The neurologist said his level was 8 times higher than normal.
Now the tests say that the B6 is out of his system, but he still has neuropathy symptoms. He feels painful "electric shocks" mostly in his feet, toes and hands, but sometimes chest and abs too. It's really depressing because he's always been fit, healthy and athletic. It's been around 2 or 3 months since the B6 has been out of him, but he's not noticeably healing yet. The EMG test said he had mild nerve damage. Can anyone tell me if they had similar shock-like zaps, stabbing pain or burning feet from this and got better over time. All we have is hope that his nerves will heal and I'm hoping to hear your experience of how long it takes or if you still haven't been cured yet. Thanks
I was diagnosed with b6 induced neuropathy in July of 07 from Centrum Vitamins. I had experienced numbness in my toes for at least 3 years. The numbness and tingling got progressively worse. No physicians in my area could tell me the problem even a neurologist. Finally I told my primary physician of the electric shock-like vibrations going up into my chest and face. He contacted a neurologist at Johs Hopkins who called me at home and asked me to see him the next day. I was tested with the nerve conduction tests and gave 9 samples of blood. Two weeks later, he called me and told me my b6 level was 66 and it had more than likely produced th neuropathy. It was a long, very difficult 4 or 5 ordeal mainly because so many no absolutely nothing about this terrible condition - and I am talking about the medical field! My shocks are not what they used to be now. I can now sleep without sleep aids, but my mobility is still limited due to the incomplete recovery of my nerves in mainly my left leg. I am a Christian and find my solace in prayer and reading Scripture. I know I am in good hands, but I did go through anxiety and depression. My wife was a huge help. Others just don't understand. I am 63 so the healing will be longer than you will experience. But you, like me, will heal. The nerves will recover. From what I have read, and I read everything I can about this problem, only those who have take massive doses of the pyrodoxine do not recover. All the rats recover. Sorry for the poor humor. I would be glad to talk with you about this. Just let me hear from you. God bless.
I have been detoxing from severe B6 poisoning for over 10 months, and it is a living nightmare.....My neurologist told me that it will take up to 3 years for the nerves to heal.....and then I'll know if I have permanent damage.....I've been severely poisoned for over 10 years, as my first neurologist missed it totally 10 years ago.....so I'm crippled, and bed-ridden, and now my heart feels like it is ready to give out.....lots of palpitations, starts and stops, shooting pains, etc.....My advice....take it one day at a time, stay focused on God, eat only organic foods, rest, rest, rest, rest, rest, and tell the nay-sayers to nay-say no more!.......Good luck!
I have been drinking an OTC "energy drink" with 8333% of B6 in it ( and hight percentages of other vitamins) daily for appx 3 years now. I know I am addicted because I crave it at 10 am every day. Am I to understand that this is going to do these horrible things to me? My body is not washing out this vitamin as it does with the vitamin C and niacin?
I had all those electric shock feelings as I was healing and it got much worse rather than better for a few months after quitting the vitamins. And the stabbing, burning pain. Now, it has been almost seven months and the pain is almost gone. I am not myself again yet as I too used to be physically fit and now have lost a lot of muscle strength. I still have twitchy muscles too. But, I know I am healing and your boyfriend will too. For me, I realized I have B12 and Vitamin D deficiency so needed to take those vitamins and avoid B6. I live in the NW with no sunlight and have been breastfeeding a baby so all my nutrients went to him.
I have heard it takes about three years for full recovery. The thing I don't really understand is why this happens. The first time it happened to me (two years ago) I was taking a fairly high dose of B complex. The second time (seven months ago) I was only taking a prenatal vitamin and having a packet of E-C every day.
For some reason, there are some people who just can't tolerate B6 and it becomes like a poison in the system. I have heard that we might not produce the enzyme needed to process it.
okay...it's been a year since my symptoms have developed and about 6 months since I stopped using the Cerefolin - mega vitamin my neurologist gave to me for low b/12.....which also contained mega doses of b/6....I have atrophy in my feel...have difficulty walking, lost arms/legs strength. I found a new neurologist that I am going to ...I am going to ask to be tested by something called Charcot Marie Tooth...I have some symptoms of this disease as well as my daughters. There are a list of medications that you shouldn't take...b/6 is one of them (mega doses). I suggest that you guys take a look at the symptoms for this disease and see if this why your reaction to b/6 was toxic. It's a disease that not a lot of doctors know about...in the state of Pennsylvania there are only 8 doctors I've found listed that actually have experience with this specific disease. The most common symptoms are hammertoes and high arches...but there are so many more. It is important to know if you have it as there are many medications that are toxic to CMT patients..including penicillian.
Excessive vitamin B6 (pyridoxine) intake (that is over 100mg/day) causes sensory and peripheral neuropathy. Some symptoms are: unsteady gait, paresthesia (tingling/pricking) and impaired tendon reflexes, and also cause degeneration of the dorsal root ganglia in the spinal cord, loss of myelination, degeneration of the sensory fibers in peripheral nerves.
Tolerable upper limit for adults is 100mg.
1998 RDA ranges for Vitamin B6: 1.1 mg to 2.0 mg day (based on age sex and pregnant and lactating.)
B6 is found in plant foods, animal foods (meat) and whole grains.
B6 is lost when foods are highly processed.
Plasma PLP concentrations are thought to be the best indicator of vitamin B6 tissue stores. 24 hour urinary test over 1-3 week period is recommended to more accurately assess vitamin B6 status.
Eating a balance whole diet is best; if you take multiple supplements - make sure you are not exceeding the RDA and if you are taking medications - check with your pharmacist and MD about Drug Nutrient Interactions. Some meds may interfere with those supplements or vice versa.
Hope this helps! Stay Healthy
(Referenced from S.Gropper: Advanced Nutrition and Human Metabolism, 4th ed, 2005)
I recently took about 200mg/day B6 in addition to a B-Complex at about 30mg/day. I took this to help with menstral issues. I have taken a B-Complex for a long time, with no issues, but not this high of dose. Within 10 days of adding the extra 200mg/day, I had some mild dizziness and maybe a little tingling. I stopped taking it right away but in the days following, I mostly noticed problems with my vission - well dizziness but feeling like it was harder to focus. About the same time I had gotten a new high quality food based multi supplement from my acupuncturist, and after a week or so after my B6 symptoms subsided (although not totally gone) I started the new food based supplement which included 100mg/day of B6. Within a few days, similar symptoms were back - not as intense and mostly related to dizziness, blurry vision. So I stopped the multi and I also stopped a green drink which I had been consuming for a long time b/c it has a food form of B6 (it's kind of like a multi too). So then again after a week or two with nothing and things improved, I just went back to my green drink. After a few days, I seems to be worsening again. I can't understand how maybe 10 days of this non-food based 200mg B6 has made it so that now I can't tolerate food source supplements, especially the green drink which I've used for years and is basically just food. I'm hoping someone can tell me if my symptoms sound like B6 toxicity - they're hard to explain - I don't have the pain some of you mention - but it seems that I have a harder time seeing and focusing - and sometimes that's mixed with mild dizziness and slight loss of balance. Also, does anyone know if I'm now not going to be able to tolerate food based B6 just b/c of this one short incident. Should I wait a certain amount of time b/4 I take anything, and then I'll be able to tolerate it. Or will this always be an issue for me? I need other things in the green drink and multi - again they are food based, but it sure seems like when I take them I get a little worse again. I'm having a really hard time knowing what to do and how can I ever explain this to a doctor - its hard to describe my symptoms. I appreciate any help anyone can give me!!! Thanks!!!
i'm feeling encouraged by many of the comments. one thing i'm interested in knowing from those who have healed within three years, does the pain gradually go away or somewhat instantly go away? does year one feel more painful than year two?
I'm breastfeeding now. and just recently I found I'm toxic with B6. I taking B6(50mg) for several month, everything was fine, baby and myself. and just around two month ago, I took a Calcium & Magnesuim pill with B6, then problem happened, I feel pain, numbness from my fingers and toes. Then I stoped it. However, my baby has problem, first she show up skin problem, the temper, the red eye, sweating, coughing, weight lossing, night cry ... I talked with baby's pediatrician about that, he had no clue. just gave us infantol for that. first few days, baby was ok, problems almost dispeared,however, then I found she start overexited after the dose. (Infantol also has B6 in it) Then, I decided stop it. She looks ok. However, just few days ago, I suffer the B6 toxicity again from the food, this time a little bit serious. She also respond serious, she had so overexitation for 2 days, insomina again, weight loss 1.5 lbs in 2 days. Now myself, feel ok. However, I do really worry about her.
Would mind share your experience with me about your baby's treatment? Please give me some suggestion from your experience. I will be really appreciat for your help.
and also thanks god, i have chance to get so useful information, thanks veryone here for sharing your experience.
I'm breastfeeding now. and just recently I found I'm toxic with B6. I taking B6(50mg) for several month, everything was fine, baby and myself. and just around two month ago, I took a Calcium & Magnesuim pill with B6, then problem happened, I feel pain, numbness from my fingers and toes. Then I stoped it. However, my baby has problem, first she show up skin problem, the temper, the red eye, sweating, coughing, weight lossing, night cry ... I talked with baby's pediatrician about that, he had no clue. just gave us infantol for that. first few days, baby was ok, problems almost dispeared,however, then I found she start overexited after the dose. (Infantol also has B6 in it) Then, I decided stop it. She looks ok. However, just few days ago, I suffer the B6 toxicity again from the food, this time a little bit serious. She also respond serious, she had so overexitation for 2 days, insomina again, weight loss 1.5 lbs in 2 days. Now myself, feel ok. However, I do really worry about her.
Would mind share your experience with me about your baby's treatment? Please give me some suggestion from your experience. I will be really appreciat for your help.
and also thanks god, i have chance to get so useful information, thanks veryone here for sharing your experience.
I am new to this post but have found it so helpful. I have what I believe to be B6 toxicity: it has been a long 4 year story - a lot of ups and downs while taking 25-50mg / day...mainly severe fatigue, pins and needles, etc. I have seen so many doctors... I stopped taking my multiviatmin about 6 weeks ago and my experience has pretty much mirrored those above. "Total nightmare" sums it up best. I'll save you the medical side of the story since its pretty much useless....
I would welcome any feedback on this concept of getting worse initially. Could anyone tell me how long the detox process intensified before they felt a sense of improvement? Do symptoms change as you go through it? (Initially I was more fatigued, now the heavy neuro symptoms seem to be evolving, difficulty walking, nerves feel raw, muscle weekness and hands etc....) Has anyone else experienced severe "crashes" of profound weakness? At times I seem to experience these rapid, extreme declines, I wind up feeling inexplicably horrible, barely able to move or even speak. I notice that I become extremely thirsty and drinking a lot of water seems to help. It could be associated with increased activity or eating, but I really try to keep the B6 in my diet to a minimum. Last question -any practical advice on how to deal with B6 foods, aside from small meals and avoiding the high B6 foods. Right now I can't seem to tolerate them at all (except in small quantities with some wine at dinner as the alcohol seems to block B6 absorption) - is it best to really try hard to avoid them for a while or to try to tolerate small quantities? Thank you for any feedback...wish you all peace and comfort.
Just a quick follow up since my last post....seems I have turned the corner and feel a definite sense of improvement. Have experimented and done a ton of research, and thought I'd share what helped most:
No supplements of any kind, lots of water, no formal excersise, just gentle stretching and getting back slowly to normal activity, 1-2 glasses of wine with dinner (reduces B6 levels... in moderation...never on an empty somach), eating very small & frequent meals, eating foods containing natural estrogens. B6 absorbtion seems to be reduced in the presence of estrogen foods. (While avoiding estrogen inhibiting foods) Apples help a lot, along with a few spoonfuls of olive oil each day. Lists of other estrogen foods can easily be found online. I now believe many of the toxicity symptoms are not directly caused by the b6, but by the severe depression in estrogen levels and resulting hormone imbalance. (At least in women) I think getting estrogen levels back up helps tremendously with energy. Also - absolutely NO aspartame, phenylalanine, nutrasweet (all the same & in many diet/ sugar free foods). I stumbled upon "aspertame toxicity" in my research. It is not only horrible for healty people but seriously contraindicated for anyone with any type of existing nerve damage or anyone who is predisposed to it (such as diabetics). I had been using Trident gum - did not realize it is loaded with aspertame. My nerve symptoms improved dramatically almost immediately upon removing the aspertame from my diet. Read labels & learn the different names it is listed under - it can even be found in some non diet foods such as lemonade and jams. If you need to avoid sugar for any reason - check into stevia - natural and safe for diabetics. Hope this helps....
Also want to add that you still need B12 and even more so when healing nerves. The b12 rebuilds myelin. This was my mistake after B6 toxicity: I cut out all vitamins. AFter a few months, my symptoms were worse and my blood work showed my B12 had gone down significantly. Also, even though the standards in the US are low for B12 (300 is considered normal) you really need to have higher levels (around 1000) to be healthy neurologically, especially when healing. Taking high doses of methlycobalimin sublingual has changed my life!
You can NOT get toxicity to B12.
I've been struggling with this pain for a year and a half now and have seen 15 Drs, including neurologists, who have no clue what I have. I'm pretty sure it's B6 toxicity. Anytime I eat any foods with B1, B3 or B6 in them, I'm in extreme pain for the next 6 or so hours. My hands and feet are always tingly, but by far and away is the extreme breast pain. It feels like someone's driving nails into my breasts with a hammer. Compression, a very very tight sports bra over my regular bra, is the only thing that lessens the pain. I haven't been able to find an explanation for this anywhere, but I think one of the posts here explains that wherever the most nerve damage occurred seems to be where the pain is greatest. I started taking B6 before I got pregnant and I think it reached toxic levels during pregnancy. Now, I'm only eating apples, celery, lettuce, sugar and a few other foods that don't contain vitamin B in them because I'm trying to lessen my pain and get the vitamin B out of my system.
That compression, known as the "MS hug", is the compression of the nerves in the chest. It does NOT mean you have MS but does go a long with nerve damage. Often people with B12 deficiency get that feeling. I feel concerned about your current diet in terms of being well nourished. I have never heard of someone having toxicity symptoms just from foods...
Of course, listen to your body and if something makes you sick, avoid it. But you do need to get enough nutrition and if you are healing from nerve damage, you really need B12 as it restores the mylien on the nerves. Visit this forum for more info: http://forums.wrongdiagnosis.com/showthread.php?p=128623#post128623
Thanks for your quick reply. I, too, am concerned about my current diet because there's not much that I can eat that doesn't cause extreme pain. Based on your Oct 29 post above, I did buy some B12 and have taken a small amount of that and will continue to do so.
Do you live in an area that has access to Naturopathic Doctors? They are Doctors who are trained in alternative therapies and also nutrition. YOu might find good support right now from someone who can guide you in this process. I want to make sure you are taking sublingual Methylcobalimin? Other forms of B12 are not as easily absorbed and can cause problems. A "small" amount may not be enough if some of your symtoms (symptoms) are due to B12 deficiency. I would recommend getting a full panel of bloodwork and checking all your vitamin and mineral levels so you will know what is truly going on. With such a limited diet, you could be making your symtoms (symptoms) worse through vitamin deficiencies. I was.
Thanks for letting me know about the kind of B12. I actually set that one back down at the store because I figured just taking a B12 pill would be easier than sublingual. Ooops.
I happened to talk to a friend on Thursday who had seen a naturopathic Dr who helped her with a problem that she had. Thanks for the suggestion! I got the Dr's name and will definitely book and appointment.
Great! NDs are so skilled with these kinds of problems and it can be hard to figure it all out alone. the sublingual should be left in the mouth (best between gum and lip) for as long as possible to dissolve slowly. that is how you absorb it best! I can tell you that it will help so much in healing your nerve issues!
Just had to put in my 2 cents. My mother & I both registered as toxic on Vitamin B 6 - she was taking 50 mg per day for carpal tunnel, I was taking 50 mg per day with Folic & B12 for High homocysteine levels. Apparently, some of us have a much lower tolerance level. I've been mis-diagnosed on this issue for so long! After my mother tested toxic on B6, I spent over a year arguing with my doctors to test my B6 levels, before they finally did - and sure enough I was toxic as well. I was told it was virtually impossible to become toxic by taking only 1 OTC supplement a day. NOT TRUE!
Recently my doctor had me start taking a daily multi-vitamin and I started having neuropathy issues! I never even thought about the fact that the multivitamin contains B6. How much you want to bet I stop taking it and things get better? Thank you so much for all these posts - it's very helpful to read everyone's experience.
It has been months since I have written - my last posting I was in an upswing of what turned out to be very, very up and down experience. Although I only took a multivitamin 1or 2 times a day (25-50 mg.of B6) it was over about 4-5 years. My symptoms got to the point where I had walking problems, so from what I understand, that is an indicator of rather severe toxicity. I have been off B6 for over seven months now. Sometimes I feel normal and then my symptoms come back. I find this inconsistency so strange - does anyone else go through this? I had a rather bad bout in recent weeks. I developed diffuse aches and pains a few months ago, and here and there would take some asprin or motrin - it seems after a while this caused my toxicity symptoms to relapse - quite seriously - almost like when I first stopped the supplements. I have also had ill effects when trying to add some supplements back in - such as vitamin D ( for the aches & pains). Seems after about two weeks of something my body just rejects it. Has anyone else found this? I also still deal with major fatigue off and on and more recently, anxiety (no prior history). I guess I was overly optimistic about the textbook "six month" recovery theory. It would be encouraging to hear from any of those who posted long ago. I would be happy to correspond with anyone on this recovery experience.
You are not alone in this experience. It has taken me three years and I still have some problems. What I noticed over the first year of healing is that I would have ups and downs and it got even worse right before it got much better. I think this is true for anytime you are detoxing. I was not able to add any B6 back in through vitamins (I tried a lesser multivitamin and it made me very sick again.) However, I badly needed to supplement with B12 and D. I found that because I stopped taking vitamins, because I was pregnant and then nursing during my healing time and because your body needs nutrients to heal, I became very deficient. I found that there were key components to healing:
B12 sublingual methlycobalimin (Jarrow brand best)
Other basic vitamins like B1, Vitamin C
My Naturopath had a special vitamin formula compounded for me that has no B6 in it. For me, this has been like miracle drink! It did take awhile to be able to tolerate it and I just slowly added more in as I felt that I could. Taking no vitamins is not a good idea. These other vitamins do not cause toxicity the way B6 can.
A good idea is to have blood test to see where you stand on Folic Acid, B12 and D. Then you will know how much you need to take. Do you have a good, understanding doctor to work with? I find NDs to much better than MDs for this kind of experience. Feel free to message me directly if I can give you any support.
And yes, this is painful. I now have a month or two go by with no symptoms and then if i get sick, or overtired, I will start twitching and aching again.
Thank you so much for your reply. I am curious as to what doses you were taking and for how long. I was on 25 mg for at least 4 years, and things got extreme when I went up to 50 mg two different times, but I was really going downhill the whole time not realizing my vitamins were the problem. As someone else mentioned, it is puzzling how you feel worse when you stop, so you think the vitamins are helping till you figure it out. Did you get to the point where you had great weakness in your legs? I am also curious how long it took (if you feel you are there yet) to get to where you would be able to work full time (if you wanted to). I know you endured all of this through having a baby - I can't imagine....
Thank you for the advice on supplements. I have been tested for all of those you mentioned - I am in range but I know my levels should probabaly be higher. I am working with a bunch of MDs - some "get it" better than others, and I do have someone who is a very well qualified nutritionist etc., and he is anxious to get me back on supplements. I have had terrible experience with this - had bad reactions to several things tried independently after about two weeks. The nutritionist I am working with feels I should be safe with a low dose of a very high quality supplement which contains only 10mg of the P5P (pyrodoxial -5-phosphate) form - which is the active, more bioavailable form. I am scared to death to take anything! I do like the idea of compounding and will ask about it at my next appointment. The person I am working with is wonderful but I don't know if he really understands the hypersensitivity - he has suggested a psychological component....
On that note I would really welcome any more feedback from you or any of the others about experiences with adding supplements back in- especially those who had a serious bout with the B6 toxicity. Or hypersensitive reactions to any other medications. I am open to corresponding directly, I am just posting here so any further experience / advice or comments can be helpful to others who are healing as well. There is such a lack of information out there -especially about the longer term, lower dose toxicity. I have read all of your stories and sincerely wonder how everyone is doing.
Well...i would NOT suggest taking anything with B6 in it. I did the same ( a low dose "natural" supplement) and had a terrible relapse. I have been able to tolerate all other supplements and I do think it is important to support your body with them.
In terms of leg weakness, Yes! I had that and arm weakness. I am still not back to normal but I am able to work almost full time. I am a massage therapist and life coach so my work can be pretty physical. I do still have twitching, exercise intolerance and I tire easily. I am hopeful this will continue to heal.
I would recommend considering the compounding vitamins. The company is called: Metabolic Maintenance.
Thank you for your suggestion on compounding. I am looking into that and food source vitamins as well. In the interim I have been juicing lots of veggies about 2x a day - I think it helps somewhat with energy and I know the antioxidants are very important in the detox process.
I am working on a letter to the FDA - the public must be warned about the effects of B6 (pyrodxine). FYI: there are three forms of B6, pyrodoxine (in most supplements), pyrodoxal 5 phosphate (the immediately bioavailable form), and a third form - pyrodoxamine; which was banned from supplements by the FDA in February. It is now deemed a drug and sold by prescription only. We are all suffereing from a long term, horrible and unnecessary illness. In my writing to the FDA I will reference this website, as I think it contains some of the most accurate information out there on the subject.
If you have B6 toxicity and have not yet posted, please do so! If you have already posted, please write an update on your condition. Hopefully if enough people speak up, the FDA can insist that vitamin manufacturers either lower the B6 amounts in their products and or include warnings that list toxicity symptoms. While this is clearly not the biggest problem in the world today, it is very fixable. Lives of many have been temporarily shattered. A warning on a bottle would have saved me long before I got so sick. I feel obligated to take some action and keep this from happening to others. So please, post here and or write to the FDA. Include your dose and how long you took it.
Best wishes to all and feel free to message me directly.
Eventually, I was also able to eat pasta occasionally in small amounts.
Then, accidentally, in March 2009, I discovered that if I took digestive enzymes with meals, I felt SO MUCH better. My pain decreased from excruciating to low or moderate. That was a huge improvement.
I went out and bought different types and brands of digestive enzymes and found one that helped me the most. It was the Nature's Plus brand entitled "Digestive Enzyme." I have no idea if there's something specific to my biology that my body wasn't ridding itself of the excess B6 in my nerve damaged areas or if digestive enzymes would help other people. I just thought it was worth posting in case it could help someone else as much as it has helped me.
Now, if I ever eat foods with vitamin B in them without taking a digestive enzyme, I get the pain again, so somehow the digestive enzymes help my body deal with things differently. But little by little, my pain is lessening so there's a light at the end of the tunnel.
I told my doctor about this and he tested me for Celiac Disease but the results were negative. For now, as long as I take digestive enzymes with my meals, I'm able to eat everything except for potatoes, corn or bananas and have minimal to no pain.
Thanks for writing to the FDA. Please, let us know if you need more help from me.
In April 2008 I had a blood test done for B6 toxicity and my levels were high but still in the normal range. According to the 18 different doctors I've seen now, there's no commonly accepted test for B6 toxicity.
My pain started during my pregnancy in 2007.
What I took that seemed to cause my health issues was:
-regular prenatal vitamins
-B6 supplements (I think they were 250mg)
-Venastat with horse chestnut root
-Metamucil fiber capsules
I took these 3-6 times a week (so, not daily) for about 15 months until I figured out that they were contributing to my pain.
Thanks for the update. That is very interesting about the enzymes. For me, the pain was not my main symptom but that maybe a big help to others. Did you have any other symptoms - like the muscle weakness or fatigue, and did you go through a "detox" phase (initially getting worse at first when you stopped the supplements)? Also, how much B6 was in your prenatal vitamin?
I just had a pyridoxal phosphate test done, and should have results in about two weeks.
I will report the result to you if interested. I have taken some kind of B-6 for about 36 years now.
The thought behind toxicity, is that possibly the liver is not converting the pyridoxine to
the P-5-P form, which may mean a phosphate issue in the liver, somewhere it's not doing the job. So the pyridoxine floats around and is essentially toxic because it is not
in it's proper chemical form. Some suggest the safe level is 50mgs. a day, no more.
Others suggest that up to 250 or even 500 mgs. a day are safe, especially if taken with
other B's. I myself, do not believe that, that's just my own opinion after all these years.
It apparently is rare to get a toxic effect from over 115mgs. a day or so, but there are a
few case reports of under that amount being toxic. Like anything, we are all different and
there is bound to be someone who responds badly to a smaller amount of pyridoxine.
A newer form available now as a supplement is I believe Pyridoxal, and is claimed to have none of the potential side effects of plain old pyridoxine hcl. Chemically speaking,
it has been long suggested that pyridoxine changes to P-5-P in the body, so taking the
co-enzyme form is a waste of money. However, I have heard of people using it and finding no apparenty toxicity issues.
Dr. Roger Williams (deceased) said that stores of all B vitamins remained in cells for weeks and sometimes months.
You got me thinking about the enzyme thing...and I did some research on porphyria. Particularly the form called acute intermittent porphyria. Has anyone been tested for this? I know Karby (above/2008) mentioned her dr. wanting to test but did not post the result. For me it could explain some of my wierd symptoms that are not textbook B6 toxicity effects. Could be relevant for some of us who are poisoned at relatively doses. Just a theory but I'm going to look into it further...will let you know how it goes.
That does sound like a high number, but did they give you any feedback on what it means? I am quite sure that pyridoxal phosphate is the same as P5P (aka pyridoxal 5 phosphate, sometimes just "pyridoxal") -which is supposedly the usable, non-toxic form. Given that they all supposedly have a short lifespan in the blood, if you are not taking supplements now, my question would be - where is it coming from? It is my understanding that different foods contain the various forms (pyridoxine, P5P or pyridoxamine). Did they also test for pyridoxine?
I'm seeing a hematologist on Friday to discuss the porphyria question. Will follow up....
I looked in my old daily prenatal vitamins and the B6 is 2.6mg, so, not much. But I was also taking a B6 supplement about 3 times a week (I really can't remember how much was in there, maybe 200mg, or 500mg) and I also took Horse Chesnut Root (to prevent varicose veins) and I have not been able to find out if that also has vitamin B in it or not but it sure does make my pain worse when I take it, so I suspect that it does.
In addition to my awful awful neuropathy, I had constant fatigue, and still have some. At my worst, I was off balance and would fall once in a while when I walked on uneven land (like a hill) but I was pregnant, so I blamed the balance issues on that.
Once I started taking digestive enzymes, I started having the bad vivid dreams at night and sleeping very deeply. When I take the digestive enzymes, my hands and feet tingle more. So I suspect that somehow the B6 is/was being stored in my breasts (where the nerve damage must have been from pregnancy) and gets dispersed to the rest of my body with the digestive enzymes.
I never did go through a detox period though. Once I discovered the digestive enzymes, I went from a constant 10 on the pain scale (where 10 is worst) to about a constant 3. I've been taking digestive enzymes with every single meal for 4 months now. Now, I'd say that if I don't eat food at all for about 18-24 hours, I'm at about a constant 1, so minimal. And then if I eat foods without digestive enzymes, my pain shoots up to about a 6 or 7, but if I eat foods with digestive enzymes, my pain goes up to about a 3, for about 6-8 hours and then back down to a 1.
The digestive enzymes that help me most are by Nature's Plus. They make many varieties but the ones that help me most are just called "Digestive Enzyme." I looked at the list of ingredients and tried to buy just the components so I could see what was helping me most. I ruled out pancreatin, pepsin and HCl. I suspect that what's been helping me with my pain is the malt diastase, also known as maltase. But I haven't been able to order only that enzyme without others in the mix.
Link to the digestive enzyme that I take:
I experienced peripheral neuropathy after taking 100mg of B6 (pyroxidone) daily for several months. This past winter my hands and feet got the numbness effect like never before. My hands would tingle anytime I bent my arms or put pressure against them. The nerve damage also gave me insomnia. I stopped B6 in April, 2009, and the symptoms have slowly decreased. I'm now falling alsepp much easier than earlier this year.
Another effect peripheral neuropathy might of caused is hair loss. I formally had extra thick hair due to the highly nutritious diet I eat. Now my hair is so thin I'm using gel for the first time in 20 years.
Has anyone else noticed hair loss from peripheral neuropathy?
Just a short update. My B6 toxicity symptoms seemed to be subsiding over time. I still had pain after eating potatoes and anything containing soy lecithin, but was doing better in general and had a light at the end of the tunnel.
A month ago, instead of resuming a multivitamin, I started taking some vitamins separately: C, Iron, Calcium and Folic Acid.
After that, my B6 toxicity has worsened again and I'm in constant pain again, especially after eating any foods high in Thiamine (B1), Niacin (B3), B6 or Folic Acid.
The C, Iron and Calcium do not cause me pain, but I was surprised that the B9 did. I've stopped taking that. Sadly, it's still in many cereals (they're all fortified) and breads.
jholley, FWIW, I have never noticed any thinning of my hair during any of this, but have definitely had increased fatigue and trouble sleeping.
I am still working on a difinitive diagnosis or rule out of porphyria as having a role in my B6 toxicity - a question in my mind as I am still very sensitive to any supplements (w/o B6) and other meds. Even the juicing caused me problems after while - seems things just build up in my system. Still working on ruling out porphyria as having a role - anyone with questions on testing let me know - I had to corresond with one of the top experts in the country in TX to get to the bottom of how to test. I am trying to get an apt. with someone at Mt. Sinai in NYC who specializes in porhyria.
I have noticed thinning of my hair through this - especially about 3-4 months after my worst phase. I think this is common after stressful events, such as illneses and surgeries, and should probably not be permanent. B6 is also involved in hormones, and hormones influence hair growth, so that could also be a possible factor. This is one of the big challenges with this toxicity - B6 is invoved in over a hundred different chain reactions in the body, so it is really hard to know what is going on.
I am one year off B6 at the end of Sept. I still go up and down. I am not able to work, still have leg weakness, feet that ache severely after standing a while, neck and shoulder pain, spells of feeling spacy, brain fog, abdominal pain (for a year now, left side, with normal cat scan) eye problems ( severe dryness, can't be on the computer very long- eyes feel "weak" - anyone else have this?) also spells of respiratory weakness. I still have the pins and needles feeling in my feet at times (worse with cool weather) , and some numbness in my finger tips, along with tachycardia that comes and goes, and I am still quite fatigued. The weird thing is, there are periods when I feel normal for a while and then symptoms relapse - anyone else experience this?
My neuro isn't even convinced its B6 toxicity - he seems to not know about all the ways B6 can mess with a person. I am also seeing a new neuro at Mt. Sinai who hopefully knows more about this.
I really do think from all my research that long term, slow, low dose( 25- 50mg) B6 poisioning is different from high dose poisioning. I also think more is known about the high dose poisioning because those cases are more easily diagnosed - people taking these high doses are often under a drs care, and hence the side effects more frequently reported. People are more inclined to know they're doing something different, and stop sooner. Also, the test studies are usually done with higher amounts, and the "subjects", human or otherwise, discontinue B6 at the onset of symptoms. (hence all the info that says subjects recovered completely w/in six months).Noone is studying people who have inadvertently been poisioning themselves for years. And I know I'm not the first to have a dr dismiss the notion of B6 toxicity becuase of taking such a "small amount". Not that the high doese poisiong sounds any less horrible, just making the point that Drs are just not aware of the fact that this can affect people very differently, and dose and length of time taken is probabaly a big factor.
Just venting some frustration and sharing my continued experinence, in hopes that it might be helpful to someone. I really appreciate all the feedback on this site, and would be happy to hear from anyone else going through this.
Three weeks ago my neuro prescribed me Trileptal. I started off taking 150mg per day and am now taking 300mg per day. This is one of the anti-seizure drugs that can also treat peripheral neuropathy. Within a week of taking this drug the numbness and tingling went away. I'm now falling alseep within minutes and I'm picking up much less hair after those showers.
My neuro said I'll just need to take this for around 3 to 5 months while my nerves slowly heal.
I am thankful for everyone posting here. I find the lack of information regarding B6 toxicity so frustrating.
I too have been diagnosed with B6 toxicity (June 2009). I believe my problems started due to a prolonged period (around 7 or 8 yrs) on combination estrogen-progestin birth control pills. After years on the pill, I began to have problems that I now believe were caused by a deficiency in B6 (panic attacks, horrible swelling and water retention in my legs). I noticed finally that I felt better if I took a multi-vitamin but even after several months on the multi-vitamin, my symptoms didn't subside, and I finally quit the pill in May 2006. Reading up, I discovered birth control pills often cause a deficiency in B vitamins, so I started taking a more potent multi-vitamin containing 80 mg. of B6 daily. For awhile, I felt better, and then I just started feeling worse & worse. I now think something about being on the pill (or maybe being deficient in B6) sensitized my body to B6.
I began to have all the classic symptoms of B6 toxicity--panic attacks & high anxiety, tingling (especially in the extremities), a most horrible fatigue, brain fog, gassiness, nausea, depression, etc. I went to my PCP multiple times and was basically ignored. (I do have a past with depression & eating disorders but had been in recovery some years.) I was treated like a hypochrondriac and sent to a psychiatrist. I later consulted a rheumatologist thinking maybe it was fibromyalgia, and she did some blood tests (but not for B6) and nothing showed up. Finally, only a few months ago, I sent myself to a neurologist (thanks for not referring me, doctors!), and she did test B6 levels as well as ordering MRIs (the MRIs came back clear). Basically my B6 levels came back off the charts--the neuro. said normal range was something like 2-20 and my levels came back over 200! She told me to stop my multi-vitamin and not to eat cereals, energy drinks, etc. fortified with B6.
But why wasn't this tested ages ago? First, I was complaining repeatedly in 2005 when the problem started (which that time I believe it was the deficiency in B6). Every time I've gone to the doctor, when they ask you to write down your medications & supplements, I listed the multi-vitamin right in the paperwork and it was basically ignored and I was made to feel like I was imagining my symptoms.
What really angers me is that between all this, I was pregnant with my daughter (and yes, put on a prescription prenatal vitamin containing B6), I was told to take a multi-vitamin while breastfeeding my daughter (she is still breastfeeding at 21 months--much less now but she has been an extremely high needs baby and I do wonder if B6 played any role in this). Thank God my daughter appears to be developing and meeting milestones correctly (other than being on the low end in weight but I am on the small side & DH is quite thin too so that may just be genetics) because I was pregnant & breastfeeding her with B6 toxicity without knowing it until she was 18 months old.
Obviously, I stopped my multi-vitamin in June 2009 after finding out about the B6 toxicity and am careful to buy cereals not fortified with extra B6. My husband has remarked that lately my skin seems to have better color & I'm less pale and look healthier, but I still do have many symptoms of the B6 toxicity. I know B6 & estrogen interact in some way and breastfeeding isn't helping matters (keeping estrogen levels lower) but I did always plan to let my daughter self wean and I figure any damage from the B6 in my breastmilk is likely done and there shouldn't be too much in there now that I'm not taking a multi-vitamin. At this point anyway, DD is mostly comfort nursing and not drinking all that much breastmilk. It helps with the 2 yr. molar teething, and that is the only thing that seems to help calm her crankiness.
I have found very little to consistently help with the B6 toxicity. I do notice the effects of it seem to correlate with my menstrual cycle (I'm not dumb enough to do another round with hormones so I have a nonhormonal copper IUD). The thing I have found to help the most is vigorous exercise, so I go to the gym and lift weights and do cardio 6 days a week. I'm trying to eliminate the caffeine (the constant fatigue makes it hard) and making more of an effort to get my nutrients through diet & not vitamins (especially since I can't take a multi-vitamin because one does not exist without B6 in it). Acupuncture seemed to help a bit as does chiropracty. I have low back pain I think may be related to the B6/low estrogen/post-pregnancy, take your pick. But sometimes after the chiropractic adjustments, I will feel burning & warmth in certain areas and it feels like muscles or ligaments that have just been so tight relax (muscle relaxers don't work to relax them, believe me, I tried those too).
For those of you who have been off the B6 awhile, what separate vitamins do you recommend taking to help with the B6 toxicity?
Interestingly, a couple months after I tested positive for B6 toxicity, my husband started complaining of an overwhelming fatigue and he was sleeping all the time (it was what I wanted to do with the B6 toxicity but with a baby to care for couldn't). I knew he took a multi-vitamin with about half the B6 as the one I had been taking (40 mg.) and he was inconsistent with it, would skip days or a week here or there. I told him he should ask his doctor to test his B6 levels when he went in for his thyroid workup (he has been on thyroid meds. since he was a teenager). He did and his levels came back high too! Not as high as mine but way above the threshold for normal. This is not an isolated problem, and I just know so many others are out there suffering with this and being dismissed as hypochondriacs by their doctors.
Thank you for posting - it is so helpful to her from others. It is amazing how many have toxicity at "low" doses. I am so frustrated that I never had a correct blood test while on the supplements, so all my doctors still think I am nuts.
As for supplements, a combination of acetyl-l-carnitine and alpha lipoic acid is well documented for helping with nerve pain and healing, as is B12. (See Savmay's posts above.) Personally, I have not really been able to tolerate anything, but everyone is different. I previously reacted very badly to they B12 methycobalamin sublingual (takling a whole tablet- which is about 16,000% of the RDA).
Recently I have been taking D-Ribose (Jarrow or Corvalen brand is best) - 4 grams 2x day and a crumb of the B12 tablet 1x daily. This is working wonders at the moment. The D-Ribose helps with energy and muscle endurance, and after a week I notice my leg weakness seems much improved. So far this is the only protocol that has worked for me-time will tell....
Regarding the interaction of B6 and hormones, I wish I knew more. I do find odd correlations with my menstrual cycle, I seem at my best late in my cycle, post ovulation & before my cycle starts. Sometimes the day before it starts my nerves feel fried, my leg muscles are especially weak and I am unusually fatigued. I have noticed that my cycle has gotten longer through all this, and that I often feel quite low at the end (days 10-14). I believe this is when hormone levels are lowest, especially progesterone. Again, everyones levels are different, but I have wondered at times is anyone else has this up and down nuture to their symptoms and some predictability in flare ups tied to their menstral cycle.
On another subject, as I am increasingly frustrated with my inabailty to work as time goes by - I keep thinking -shouldn't the vitamin company bear some liability for this? I am giving serious thought to legal action - at least to cover lost income and the basic destruction of a successful careeer. I have no idea if I will get anywhere, but it seems we should all be entitled to restitution. I wonder if anyone else has explored this. I will post any developments and also I am offering support to anyone else seeking to pursue this process.
I too have noticed my symptoms changed with my cycle. Now that I am 75% healed, I still have a minor relapse of symptoms during PMS and right after my cycle. This makes sense from an inflammation perspective b/c inflammation is higher during the PMS stages. I am so grateful to be "almost" well! I can exercise, work and sleep! My minor relapses are not enough to cause significant issues. Just some buzzing and tiredness in my legs/arms.
I hope for complete healing for us all!
My six month old son has had stiffness in his legs, and now a tremor. They were looking at Cerebral Palsy, but I recommended checking vitamin B because my mom is deficient in B12. The doctor did a check and found my son's B6 and B12 are ELEVATED. Nobody knows why, and I only found out from the nurse. Haven't spoken with the doc yet. She is waiting to call until she hears from the specialist. I am just wondering if the tremor in my son's legs (only occasional) are part of this B6 thing. I don't have a clue and I am so upset right now I can't think clearly.
I had been complaining about burning feet and legs, and a high sensitivity to any cloth touching the skin of my knees. I got tested for vitamin B6 levels and it came back over 100. My neuro told me to check all bottles of supplements I had been taking and to stop any of them that had vit B6 in them. I checked my calcium supplements and was horrified to see that 2 pills contained 500% of the required daily amount - and I was taking 6 pills a day! The cereal I had been eating at 25% of the daily value, and my multivitamin had B6 in there too. I have been off the supplements and cereal for a little more than a week now. I expected to feel better right away, but after reading more about it, I realize that's way too soon. I just hope I haven't caused myself permanent damage, because I can't stand the thought that I will be feeling like this for the rest of my life. Sometimes when I'm in bed at night I have to hang my feet over the side because just the pressure of the mattress on my heels is painful and keeps me awake. I have stopped eating avocados and bananas because I read they have lots of vit B6 in them. This website has been very helpful.
I recently changed brands of Vitamin B complex and went onto a stronger formulation .. I take vitamin B for longevity reasons .. cut a long story short when I swapped to the new stronger brand I got sick within 2 days .. I thought I was coming down with a flu and didn't correlate my condition with the Vitamin B at all and kept taking a tablet omce a day when I could manage to prepare some food for myself .. things got worse and after 4 days of illness I realised that it wasn't a flu .. the main symptom was a splitting headache .. I managed to crawl over to my computer and quickly did a google search for Vitamin B poisoning as was now suspicious as could smell a disgusting vitamin B smell in my nostrels .. I found this website and a few others and quickly decided to stop taking the vitamin B tablets and will never take any form of vitamin B tablet again .. after 2 days longer and many paracetamol tablets my headache and body pains started to subside .. today is day 3 and I have few signs of headache remaining but still have the disgusting smell in my nasal passages .. from this point on I will be extra cautious about vitamin tablets and will be sourcing my vitamins from foods and had no idea that over the counter Vitamin B complex formulations were chemical cocktails but assumed them to be extractions from foods (now wiser) .. I am hopeful that I will make a full recovery over the next few days and am lucky I am not a cigarette smoker otherwise would not have been able to smell the vitamin B smell in my nasal passages .. it smells like feacal matter .. puke!!! .. thanks to sites like this on the internet it has saved my bacon .. I doubt a doctor would have known what was going on and would have simply sent me home with a prescription for paracetamol and codiene ..
I have recently been diagnosed with a B6 value of 90 while the upper limit is 20. I have dizziness, muscle pain including chest area with palpitations.
I went to the ER and all test negative. This is painful and stressful. I know
I have read the other posts, but can someone respond who had similar
symptoms to let me know that this is typical for B6 since you worry that it might be something else. Like everyone else I was only taking a small value of 25 mg for a few months....
Good to hear from someone on this. Is it possible to have this much body pain that seemed to come on so suddenly. The chest pain is the scariest.
Funny that we all take this to improve our health and the opposite happened. Hmmm.
Just like the previous poster I was recently diagnosed with B6 toxicity of 87, with my lab's upper limit being 30. I have been recently going through a battery of tests to determine if something more serious was going on as I have had major chest pain, shortness of breath, palpitations, etc. The really perplexing thing is that all I have ever taken is a standard multivitamin with a total of 2 mg in it! How is this even possible?
I am thinking my body must for some reason be lacking the ability to properly digest B6, so it is spilling over into my blood continuously. Has anyone else seen or heard of this happening from only 2 mg of B6? Could it be a sign that something is wrong with my liver, and if so, what type of doctor would I see about this?
The first time I had toxicity, I was taking more B6 (around 50 mg). But the second time, I was only taking a small amount (in a prenatal vitamin). My ND says that she suspects some people don't produce the enzyme in their liver to metabolize the chemical form of b6. however, B6 in food does not seem to be a problem. Think of it this way: it is a chemical and our bodies are not designed to process it!
I had many, many tests and my liver function is very good. Just stop taking B6 in vitamins and get it through a healthy diet!
Well.. I was a special diet called "Heart Healthy Diet", this is a basicaly a DASH Diet and they emphasis watching your HOMOCYSTEIN levels. Well i lost 30lbs on this diet and felt pretty good after 3 months , but when i tested my HOMOCYSTEIN is was OFF THE CHARTS at 20.1.. I was floored by the result account I am EXTREMLY healthy(dont drink,smoke, no artifical sugars, JUST PLAIN OLD GOOD food. In anyevent I decided i will try to reduce my HOMOCYSTEIN levels by taking MEGA DOSES of Vit b6,b12, and folic.. BUT FOR SOME REASON I thought it may be a GOOD idea to see where my B6, b12, & folic level are CURRENTLY AT.. Normally i just take the meds, but
for some reason "thank goodness" I decided to get my LEVELS CHECKED OUT..
Well my folic and B12 were GOOD , but my VIT B6 was 64 HIGH(blood test limitwas 21).
GEEEZZZZ!! I was liked WHAT THE HELL DID I DO NOW!!! ,, In anyevent I am NOT going to take the SPECIAL 120$ LIFE EXTENSION HOMOCYSTEIN REDUCE SUPPLMENTS that i bought. I am NOT conceren with my HOMOCYSTEIN values no more and MORE conceren with my B6 values.. Plus what makes me feel better about my HORRIBLE HOMOCYSTEIN levels is that MY CRP-C reative protien was REAL LOW at .3 and my cardiologist said u probably have the GENE in your system that does
not process some MTFT or ?? to get rid of homocystien.. So i am screwed with that..
I just thought i would share my story.. I suggest before taking any vitamens someone
should do a BLOOD profile.. I got lucky, because normally i would never think of doing that.. No i got to get my VIT b6 down?-- crap all healthy foods are loaded with it
I have just found out that i am toxic for b6. i have been through a battery of tests and had to come from ND to TX to get any testing done---military doctors will not test very much, they mostly write perscriptions. anyway, I came home and looked to see what could be the source of the b6. the only thing i found were forvia multivitamins for people with IBS/celiac (i have celiac), which only have 5 mg/capsule. i only took them for 20 or so days, sometimes only 1 and was inconsistent. i have to wonder how long i have been toxic. i started working with a trainer in early september and we both were disturbed at how my muscles would shake uncontrollably during certain contractions, I've often had tingling/numbness in my toes. Recently, at the beginning of December i started having spasms in my hands that left me unable to move them for 30 min-2 hours, i was unable to eat without my hands and feet getting extremely cold and pale (even fingernails turning blue), tingling and burning pain in my feet, my skin has been extremely pale, no energy, shortness of breath from chest compression, eczema like rash, acne still bad. i keep a food diary due to a few allergies and celiac and found that i cannot eat many of the foods that i now see to be listed as high in b6. luckily i have a good FNP, but wonder if I need her to refer me to some sort of specialist. Can a neurologist do anything for me? who can figure out what is causing this type of toxicity if I am not supplementing at even close to megadoses? i was taking a drop or two of progesteronel to regulate my period and help with ovarian cysts and acne, could that have predisposed me to this problem? Also, my family carries genes for hemochormatosis--i need to be tested, but does anyone know if that could contribute, with the liver involvement and all?
i forgot to ask, as you all know there is a serious dearth of info on toxicity for b6, where can i find an exhaustive list of symptoms? i have found bits and pieces here and there but no two sources say the same things. anyone have this info? also, would processed food help for a short period? it seems like whole grains aggravate my condition. i usually only eat whole foods, and i know the processing can take the b6 out of food.
Where is this "serious dearth of info on toxicity for b6" u talked about in your POST?
Whats your blood level of b6... I posted my story and I have not read about anyone dieing just having a miserable life intill the DETOX
THanks... I see... Yep there sure is not alot of info... I think it wise before anyone starts taking mega doses of a vitamin that they have their blood levels check. Thank goodness I check mine or who know HOW HIGH my VIT B6 would have been .. I am GEEZ i was gonna take like 15000% of the US daily recommends to lower my homocysteine levels.. Hell I was gonna have a stroke one way or another...
Keep a list of what you eat and what symptoms you have. I have a lot of the same issues. The "healthier" the food is, ie: the more whole grains, the more pain it causes me. For example, I'm in less pain after eating white bread than wheat bread. What is tricky is protein like chicken or tuna because they take longer for a body to absorb. The pain starts about 4 hours after I've eaten those meats instead of immediately, so it took me a lot longer to figure out that I shouldn't eat them.
After keeping a lot of lists, I finally figured out that the foods that do NOT cause me pain are:
Foods or supplements with Niacin (B3) or Folic Acid (B9) also cause me pain. The foods that I have to avoid at all costs are high in not only B6 but other B vitamins:
-soy lecithin <- this is in tons of stuff
I'm in my 3rd year of pain now. :( I stopped taking the B6 supplements in April of 2008 and I'm still suffering. I hope it goes away. Sometimes, it seems to be less miserable, but then I'll accidentally eat something that sets me back.
Advil and Tylenol do not help nerve pain. You can ask your doctor for a medicine like Nuerotin for the nerve pain, although that has a lot of yucky side effects. I found that St. John's wort helped some (both in herbal tincture and homeopathic form). This might not feel okay to you, but I occasionally smoked marijuana at night to help both with pain and sleep and that was the most effective remedy until my nerves healed. Personally, I think that is better than taking powerful prescription medications but I also know that everyone has their own perspective about it. I live in a state where it is legal for medical purposes, you might not.
My Dr. prescribed a few things for my pain. One is Gabapentin and the other is Lyrica. Gabapentin was giving me other side-effects. It's been a while since I've taken it so I can't remember what bothered me most about it, but I think it was extreme constipation. That, in turn, gives me heartburn. Gabapentin also made me very tired and drowsy. Lyrica is much better, but it still makes me very slow to react to things. Kind of like after I've had about 3 beers. I don't feel comfortable driving after I take it.
I have not had too much trouble with pain after reducing my intake of vitamin b6 in the foods I eat. However, if I get even 2% of the RDA of B6 I have a tightening in my chest that prevents me from taking full breaths. When I go to the gym, no matter what I've eaten, I cannot even walk on the treadmill at 3 mph before I get the same tightening. It is not asthma and is not relieved by inhaler--tried that. Is there anything I can do to reduce this symptom? It is really disconcerting and limits my activities.
My neuro gave me klonopin which helped with nerves, muscles and sleep. (No bad side effects for me- and I seem to have reactions to most everything since having this toxicity, though I ususally saved it for bad nights, & did not want to take it regularly since it can be addictive) Some of the worst advice I got from a naturopathic doctor was to stop drinking my nightly glass of red wine. This helped "take the edge off" the pain and discomfort without the side effects of some other drugs. It also lowers B6 levels and made it so I could eat most anything with a glass of wine for dinner. Also, I found tylenol ok, but had a very bad relapse after using motrin (same as advil) and asprin for a while. Meditation and other deep relaxation techniques were -and still are- (18 months later) extremely helpful.
I've been having symptoms since October - pins and needles in my hands and feet at night. I went to a bunch of doctors and had an MRI of my spine and EMG. All normal. After googling my symptoms, I finally took matters into my own hands and got tested at AnyLabTestNow, where you don't need a prescription, but they don't take insurance. Well, my b6 levels are high! And all I'be been taking is a basic Centrum, Omega 3 Fish Oil, Calcium and Vitamin D, and eating a lot of cashews. I've now cut out everything except the calcium & D, and I'm trying to figure out what I can eat safely.
I finally got frustrated with the lack of comprehensive info about b6,and finding different info on each site I looked at. So, I compiled some info into a private document which includes anecdotal information about experiences and what works best to help B6 toxicity. Message me with your email address if you'd like me to send you this doc....would be good to have people add to it as well.
The trick is to take NO supplements with B6 in them. I actually had my doctor order a special vitamin formula for me compounded with no B6 from Metabolic Maintenance. You really do need the other vitamins to restore the myelin sheaths on your nerves that were damaged by the B6 toxicity. B12 has NO toxicity level.
I'm becoming very frustrated. I was getting bette, but now am worse again and cannot account for it. How long can I expect these ups and downs? Does anyone know any doctors in the St. Louis area that are familiar with B6 toxicity?
The healing process is frustrating. I took me a couple of years to become symptom free and it got A LOT worse before it got better. While the nerves are healing, there can be an increase in symptoms, especially pain. Have hope, you will get better! It would be a good idea to retest your levels and also check your Vitamin D and B12 to make sure you are not deficient in these two important vitamins that aid healing. Also, increasing Magnesium can help the healing.
I would definitely be careful with any supplements, personally I have had more bad experience than good. It is true that B12 and magnesium are important for healing nerves and muscles, they are also cofactors for B6 - meaning they will help increase your uptake from whatever foods you are eating. I know some of the others who posted above shared with me in personal messages that they also could not tolerate other supplements, magnesium in particular. Its tricky as we are all affected differently and to different degrees. I do think it wise to check levels and then proceed with very small amounts if you decide to go ahead - maybe just a few times a week to start. Only add one thing at a time, keep a journal, and give it a few weeks before adding anything else.
I have only been able to take Vitamin D 1000 mg daily, a crumb of a B12 tablet here & there, D-Ribose, and vitamin C with no problem. Aside from B12 being a cofactor for B6, it is not toxic like B6, but it can increase heart rate (not good for me as I have tachycardia from the B6 toxicity) in some. Also, some have issues with developing tolerance/dependance/withdrawal after taking high dose B12 for a sustained period. There is much information on this if you search.
For the person who asked above, a hematologist or gastroenterologist can check your liver, even an internist can run basic tests.
I tried donating blood regularly hoping that would get rid of excess B6 but I didn't notice any lessening in my pain.
That is fascinating that taking other supplements might make your body absorb B6 from foods! I have had a lot of heartburn lately and have been taking Tums and Mylanta and they both cause my nerve pain to get worse. Mylanta has a ton of magnesium in it and I wondered if that was related to my pain.
I did some research about Soy Lecithin to find out why even tiny amounts of that cause me so much pain. Here's what I found from various websites: "Lecithin is converted into acetylcholine, a substance that transmits nerve impulses. Acetylcholine is a neurotransmitter."
For heartburn try a vegetarian diet for a while. No dairy either - it actually aggravates symptoms. Also, reduce protein intake to the minimum you personally require. (You can look it up based on weight) Protein produces more acid in the body. Know that artificially supressing your stomach acid over time can be bad for your bones. We actually need stomach acid for calcium to be properly absorbed, which is why the whole "take Tums for extra calcuim" thing was such a scam. Been through this myself...the stress of chronic pain can do this to you. I'm a big fan of meditation over drugs, having tried both.
As for cofactors, all the B viamins are cofactors for each other, including B12, which is why it is generally suggested to take them together and they are sold in "B complex" formulas.
As for giving blood, the B6 levels go down pretty fast, but the lingering damage in in the muscles and nerve tissue is what causes the symptoms. I assume someone is checking hemaglobin levels so you won't become anemic by giving too much blood...
I was diagnosed with vitamin B6 toxicity after I went to three different doctors for relentless burning feet that felt like they were being roasted over hot coals and were about to explode. My B6 level was over 100!
After I stopped all supplements that contained B6, my feet continued to burn. I had nerve conduction tests and punch biopsies on my calf and foot. Everything was normal. I was given prescriptions for Neurontin (didn't work), Nortriptyline (didn't work) and Lyrica (didn't work). I finally read on the web that Amitriptyline was used for neuropathy with quite a bit of success. I asked my neurologist for a prescription of this, and within a couple of days of starting it, my burning was gone. I suffered for almost a year with this, and I am so relieved and happy that I finally have relief!
I was diagnosed with B6 toxicty last Nov. My levels are now normal (12). It has only been a few months. However, I am still in a great deal of oral/facial pain. Extreme pain, numbness and soreness in my hands and feet. My mouth burns, my teeth are in constant pain and my feet are tight and numb and feel like they are on fire. The more I am on my feet the worse the symptoms. My question is this: I am taking the Nerve Support Formula that I was recommended, but it has some B6. I was assured the levels were safe. In fact I was told that they are treating others with toxic levels of B6 with success. Has anyone tried this formula and if so, did it help you? Does it get worse before it gets better and why?
I would welcome any insight into this. Thank you all :-)
I found that taking ANY amount of B6 caused toxicity for me and I ended up having a relapse while taking "safe" levels of low B6 in a healing formula. I recommend discontinuing the formula and looking at what the other elements in it and finding them independent of the B6. I found B12 and magnesium to be very helpful in my healing process. It took three years for me to be mostly symptom free and the first year was extremely painful, with the pain getting worse before it got better. Hang in there!
Thank you for your reply. It is something for me to think about. Did you take Methyl B 12 and what mg of magnesium did you take? Did you also take folic acid? What about foods with B6? Also, how did you get toxic levels of B6? Was it through a vitamin?
Why does it get better before getting worse? I will look into Metabollic Maintenance.
I got the toxicity through taking a sublingual B complex formula for PMS. I had a second relapse of toxcity while taking a simple prenatal vitamin with very little B6 so I now I am intolerant to any amount of CHEMICAL B6. I tolerate it fine in foods in its natural form.
I do take the Methyl B12 sublinguals and Magnesium at about 800 mg per day. I did take extra folic acid during healing but now just the amount in my compounded vitamin formula from MM that contains no B6.
The symptoms get worse before better because the healing process is painful. The damaged nerves get re-myelinated and wake back up. Think about when your foot goes to sleep and how painful it is when it is re-circulated. Also, your body de-toxes from the B6 and that causes all kinds of funky de-tox symptoms. For me, it took a year to get through the really tough part. Now, three years later, I am mostly symptom-free.
Just had to say that I am so grateful for this site & the ongoing posts of other B6 victims - thank God we have a place to share information!
Random question here, somewhat triggered by Savmay's last post - I am at month 18 off all B6, and have been experiencing ongoing vibrations in my feet. All my other symptoms are very slowly getting better, though I still deal with a bouts of major fatigue & feeling like my brain is swollen at times. Considering I was having trouble walking at one point and couldn't breathe from this, I am happy with my progress, but frustrated that I am not well enough to work yet. The vibration is the only thing that seems to be getting worse, so I'm going back to the neuro. It actually started a few months ago, once I was well into the healing process. Anyone else experience this? Could it be part of the nerves "coming back"?
Not sure if it is the same thing...but I got a pulsing feeling in my nerves as they were healing (maybe like vibration?). I found the magnesium really helped with this. that is the one symptom I still get sometimes when I am really tired or during PMS.
This is definitely vibration - like a cell phone. In both feet off and on and sometimes base of spine / pelvic floor. I have had other pulsing, twitching sensations, but this one is the most concerning. I wish I could take magnesium. I have tried several times. At first, I'm ok, and then and then I start to feel a relapse coming on. After some of the others messaging me that they have had the same experience, I just swore it off. Same for B12, (except for just a crumb every few days) which in theory, should be helpful as well. Maybe in six months or so I wil try again. (I do try & eat a magnesium rich diet, though, and that seems ok)
Great article on B6 - thank you! I have all the osteo-arthritic issues mentioned, and the right shoulder upper back problem as well. Problems & pain in multiple joints, etc. I thought it was so interesting they mentioned the specific problem area and side of the body commonly aflicted. Wow! One doesn't hear much about osteo-arthritic symptoms...but they are some of the worst, in my experience, because I know they won't get better with time. I am only 40, and was otherwise healthy, fit and active. It is frustrating to see some healing of the other symptoms, but then to have other problems developing. The only upside is that when you start talking about a degenerated disc, at least everyone knows what that is and no one looks at you like you're crazy ....got to find the light in this somehow!
What about headaches.
Anyone suffer from headaches?
I just started this.
For the past 3 days!
Contessa: Me too with the article. Upper right back/shoulder/neck - and for me, as well as the L2 pain. My joint pain comes and goes, depending on the degree of other symptoms - zaps/stabs/twitches/etc.!
Take a look at the Anti-Inflammation Diet - Book by Monica Reinagel. Very interesting.
Maybe it can help you with the joints if it is really bad.
Also, maybe it is the type of Mag. What if you took an extremely highly digestable one, in small dose? 125mg at a time. Called Mag2. I think it is more $, but people are highly sensitive to Mag seem to have less side effects, so maybe it might be less dramatic for your body too?
In reality you body can only absorb mny nutrients a little at a time anyway, otherwise it is lost or overtaxed.
I'm 18 and I've been taking 1-2 Neurobion (containing 200mg B6 each) for about two months, and now I have a 'pins and needles', tingling sensation in my hands and feet sometimes, especially when going to bed... Nothing like what you've described here (no pain etc) but it's quite annoying!
Is it going to go away?? Thanks. (Of course I've stopped taking any B6).
Thanks for the link, and I totally agree, the form of anything we take is so important. The mag 2 seems to be the citrate form, which is most bioavailable and I have used for years. Its also good to take in proper ratio to calcium (1 mag : 2 calcium), which furher helps absorbtion, along with a little boron. (Calcium is also very good in citrate form.) I finally found a formula that has all 3, in proper proportion - it is Nature's Plus Cal/Mag Citrate. Has no allergens - very clean formula. At Vitamin Shoppe. Sometimes I pop one for palpitations, and I swear, it does help. Maybe I will try just taking a little 3 times a week and see how that goes...Thanks gain for the info. & will check out the book.
As for headaches - not regularly, but occasionally I will have one on and off for a few days. Doesn't respond to Tylenol, either & I can't take Motrin or asprin. Also, occasionally have a few days of feeling nauseated. I often wonder if this is the B6 or hormonal / perimenopausal.
I have been studying B6 toxicity for two years - and I would say you have every reason to be optimistic! Thank goodness you figured it out and were only taking the stuff for six months. Also, since you don't have any of the other symptoms - that is another reason to be encouraged. This is my second time being poisoned. The first time I never figured it out, and just stopped taking the vitamins. It sounds like I was a lot worse off than you, even the first time, and I got better. Many of the horror stories on this site are from people like me who took the stuff for a very long time & had no idea why we were feeling worse and worse. Just watch out for hight B6 in diet and hopefully you will be feeling better soon.
Has anyone with B6 toxicity suffer from oral pain and burning such as burning mouth or pain in the teeth as well as numbness in the face and head? Just curious, I haven't come across many sufferers with pain and numbness above the neck. If so, what did you do for treatment? I was told to take omega fish oil-DHA and aceytl-l carnitine to help with the healing process.
Right after I started detox, I was brushing my teeth and there was blood on the toothbrush. I looked in the mirror and my gums were beet red. They were back to normal color by morning. I could not lay my head down on my left ear for a couple months as it hurt too much to do so. At about 12 months after starting detox, my jaw on the left side hurt and I was only able to open my mouth a little bit for three months. It also hurt to chew. I had teeth pain that felt like a bad tooth. I went to the denist and he could find nothing wrong. He also xrayed my jaws and said they looked fine. I am very gun shy about taking anything and just let time take its course.
Advanced Research NCI
Dr. Hans Nieper (German Doctor)
Okay, has anyone ever heard of this supplement or this Dr.
He has past away, but apparently his legacy lives on, and so does his supplements!
And this supplement apparently helps MS victims with remylation!
My mother's dear friend met up YEARS AGO, in Germany, when she took a sick friend.
She took it for the membranes of her heart, and apparently it healed so well, the Drs now say her heart is as healthy as a 20 yo. She is in her late 60s/early 70s!
Have you been diagnosed with B6 toxicity? What are your levels and how long have you had this condition? My problem started in my teeth, just the front top and bottom and in the course of 4 years, all of my teeth have severe nerve pain and numbness and my gums, tongue and roof on my mouth burn and sting like crazy, all the time. Have you found your oral pain to be spreading and becoming more severe? Do you have any other symptoms?
Two years ago I developed symptoms of neuropathy in my hands, feet, arms and legs.' I now have muscle tenderness and soreness and bad headaches all the time. Are you feeling any better now?
I am 53 years old en living in Holland. I took sice 8 years multi's with 15 mg B6 in it.My level B6 in the blood is now 115 nnmol, maybe not very high, but 8 years using this stuff is wrong.
I am suffering from neuropaty in both feet. The skin on my left big toe is numb. Under my feet are cushion,
In the end of january 2010 I stopped using the multivitamins. Now I am depressed, feel sad and feel much fear fot the future.
This week I felt somtehing strange. I very, very little piece of skin on the big toe felt alive. But is is soo small. Who recognizes neuropaty caused by multi with 15 mg B6 and who can tell me how recovery starts? Where does it start, on the top of the numb toes or somewhere else. Please tell me your experiences because I am exhausted, feared en depressed. My neuro does'nt know that B6 can cause neuropaty.
She doesn't believe this.
Soory for my bad English.
B6 toxicity - will stop vitamin, but want to get pregnant
For a year now I've been complaining to my doctor about fatigue, muscle weakness, tingles in my feet and fingers that have spread to my legs and arms. My limbs fall asleep quickly, my muscles tremble and sometimes vibrate. I experience severe restless leg feelings, my eyes sometimes seem fuzzier, and my thinking abilities are severely reduced. I can barely concentrate and also experience sudden attacks of low blood sugar. I truly thought I had MS or was going crazy. After tests for mono, Lyme's disease, and a few others came back negative, my doctor tried to prescribe me an antidepressant. I declined. A few more tests came back and showed that I have low levels of vitamin D and abnormally high levels of B6. I decided to research symptoms of high B6 and stumbled upon this thread. It's like reading my own symptoms over and over! I am thankful and angry at the same time. This is the second time in my life I've experienced this, the first time it was blamed on B12 deficiency and a possible case of Celiac. I take a pre-natal vitamin, salmon oil, and an Ensure or protein shake daily, if not twice daily. Will stop the pre-natal, but worry about keeping up my other levels like folic acid for future pregnancy. Any advice?
There are many here that can give you very good advice.
Some have now recovered.
I am currently going through the recovery process. It is ALREADY feeling long, difficult, often uncomfortable and painful. I discovered my high blood levels in October, which were finally reduced and normalized by January. I had a few blood tests and a brain MRI. The Neuro is going with b6 toxicity since my levels were very high, and said it will take a minimum, yes minimum of 2 years to feel normal again. And I may not fully recovery.
Some of the most hopeful information that I have learned is from here. It has also kept me falling apart! Other information can be found on the internet by googling b6 toxicity. Though after what I have learned here, and have experienced myself, many docs are clueless! (Heimen your Dr. is WRONG!) From here I have learned that everyone is suffering differently. My body has been "attacked" ALL OVER. From the top of my head to the bottom of my feet. What actual specific symptoms? Well here it goes!
I don't think I missed anything! As I type this, I am concentrating on the fact that I had about 5-7 days of calmer symptoms. Trying not to get overwhelmed with the fact they are back with a vengence from head to toe. YOU MUST FOCUS ON THE POSITIVE. YOU KNOW HOW YOU FEEL. BELIEVE IN YOUR RECOVERY! If necessary, DAY BY DAY.
Some believe supplements are beneficial to recovery, others do not. For me, I limited what supplements I took until my levels were absolutely normal, and then I only take supplements INDIVIDUALLY. I will forever avoid ANYTHING with b6! Some got personally COMPOUNDED VITAMINS. Excellent way, but a little more costly!
Some say b6 food makes everything worse, others say it didn't matter. I did limit at the beginning, but eventually continued eating normal, of course no supplemented foods! (Tingle Toys watch those shakes and Ensure! Aren't there foods that are excellent Folic Acid Sources? Can't you just take Folic? Can you check with a Naturopathic MD?) I eat plenty of veggies steamed and raw, all high with b6, so this may be some cause to my discomfort, but I realized the importance of proper nutrition to the bodies recovery. It is a personal choice, you should seek help if you are unsure on this. However, AVOID b6 in all supplemented forms!
Another consideration is also to watch out for Night Shades (can effect nerve health), Dairy, Wheat, etc. There are certain well known things out there that have been known to effect nerve health as well as inflammation issues!
Well I rambled on long enough. Hopefully others will answer you!
Need to calm myself down. Need to get thay HEALTHFUL SLEEP.
Good luck 2 both of you!
Ohhhhh yeah! Patience, optimism, and hope are a must!
I really am not sure myself where the toxicity came from. My husband thinks it was from a natural greens drink made of natural foods, that made me b6 toxic. But of course, natural food sources are not suppose to...??? Who knows. Otherwise, I was on a max. of about 25mg, maybe 30mg at a time, and this was not all the time either! I believe Sav had mentioned sometime back, or maybe someone else, that it is believed by some that there are individuals whose bodys (liver??) do not process the suppl. b6 properly, thus no secretion, thus toxicity.
With detox comes more discomfort. Sorry, I can't say otherwise, but it is not comfortable. Your current symptoms will get stronger, and then they will change. You will notice there is an actual cycle of recovery for the nerves. I THINK something like this...Tingling, then perhaps a stronger prickling, then perhaps a stronger zapping/shocking, then perhaps a nerve pain or stabbing, then perhaps muscle fascilations and nerve pulsing, then perhaps muscle aches, then done. Now you have a lot of damaged nerves, and they are all at different points of this cycle. So brace yourself. Just know, it eventully comes to an end!
I stop suppl. in Oct. 2009. And things were bad, then calmer, then bad again, then worse, then calmer, the bad, then worse, then even worse, then even worse, then calm, then bad, you get the idea. It is a like riding a sailboat across the atlantic, you never know what you will encounter, rough or smooth seas, you just have to push/hold on through until calmer days.
I do not know about 6 months! I read that in many places too! Not for me. We are in May now 2010. I stopped in Oct 2009. I am passed 6 months! Two ladies, I AM SO FORTUNATE, who have guided me through this process, who both recovered, said their most uncomfortable experiences were during their first year! They did indicate the greatest pain stopped around 6-7 months, however many of the symptoms continue to come and go, and improve over the years. The time scale for 'total' recovery (still lingering symptoms when tired, sick, stressed) is 3-5 years.
I spoke to another Neuro, as I was watching my daughter in the park, and she said, if the cell nerve was dying, you would loose total feeling, if it is recovering, then you would begin to feel something, pain perhaps, but as long as it is not numb, it is alive still.
Look on your fish oil bottle. I really don't think there is b6. I take fish oil. Your in Holland. How is your d3? I know for you, your now having longer hours of light, but you do have a lot of darkness otherwise, perhaps you can check? It is very important for your recovery.
What have I used for my recovery. Mag, Cal, CoQ10, Fish Oil, B12, Vit C and for pain and anxiety St. John's and Kava Kava. I don't know what your chemistry is, and I don't know what medications your own, so is there someone you can talk to about all this and anything else that might help you? If you look back on this chat log here, people tell of the their personal experiences with different natural supp. in their recovery process. It is well worth it for you to look back.
I also rest, when my body is at its worst, when i can.
Hi there! Good advice Jen. I want to add that Dr Andrew Weil recommended taking acetyl L carnitine twice a day along with Omega 3 fish oil DHA.
I am still conflicted about why since my levels are normal, why do I continue to experience such debilitating pain, burning, numbness, tingling, prickling in addition to awful muscle aches and tenderness, achy feet and snapping, popping and cracking of bones?
Has anyone noticed their bones making such a racket??? It sounds like my bones have lost their elasticity, whether that is from the toxicity I do not know. Does anyone out there know? It has been 6 months since I stopped my supplements and my symptoms are much worse than ever even though my levels are a normal 12. Does anyone experience severe headaches and head pressure or a fullness sensation in the head?
It is nice to know there is a forum like this to help each other and offer each other encouragement and to know we are not crazy and not alone.
Dear Tzennifer, thank you very much for your advise and help. I am very greatfull for that.
In Holland we had an awfull cold and long winter with less sun and very much snow, but most off the time during the year we have enough light and sunshine. Our spring and summer are mostly long and sunny. So that will be ok I think.
I take L carnitine, each dag 1000 mg. It was advised by a doctor in a small place called Soest in Holland. He and his med compagnon are very good with neuropaty. On their inetnetsite I discovered first that too much of vit B6 could harm your nerves. But there are not many Dutch sites who can inform you about recovering from B6. My bloodlevels were maybe not very high, but I took 15 mg B6 pyridox 5 phospate each day for many, many years.
I think that this is the strong stuff of B6.
Well, again thanks!! Keep the fait, I will pray foor you all.
I started to experience weird symptoms this past January. Finally saw a neurologist in March, who ordered blood tests and called me to say my B6 levels were way too high and that my symptoms were indicative of B6 toxicity. Stopped all supplements that day, and re-took B6 last week. My blood level is now normal, after 6 weeks, but symptoms remain about the same. This forum has been so helpful to me.
I only took Emergen-C fizzy drink (10 mg.) and magnesium pill with 5 mg B6, daily for over a year. A total of 15 mg B6 - not very much, but enough to cause horrible sensations which sound like they could take months or even years to abate.
My symptoms are primarily muscle fasciculations (calves and feet), paresthesia and hyperesthesia. I learned these expressions from looking up B6 toxicity - but understand it means weird tingling, needles/pins, and general "buzzing" - perhaps some numbness in toes. I don't have any weakness or pain - just odd sensations much of the time.
I am very grateful for this website, and wish the FDA would warn people about B6 and force vitamin manufacturers to lessen the amount they put in their products. I just went online today to the FDA website and filled out a questionnaire complaining about this.
Thank you to everyone that contributes to this website. If I learn anything helpful, I'll post. But so far, I have learned everything from all of you.
You are taking b6 again?
I personally would stop any and all supplements with b6.
And I would never take them again.
The one very important thing I have learned from this forum is avoid all b6 suppl and suppl foods!
Our body has warned us, we can not excrete the chem. prod. b6.
There are plenty of natural sources out there -- in our foods. Not suppl. foods though!
And it will take a year at least, maybe more if more toxic/more damaged (2-5 years) to be normal again. And then even after that, sometimes there is residual damage.
First of all what was your level?
You often say..."Not too high?"
If I remember you said 115, correct.
Well 115 out of what?
The level of measurement used her is mg/l.
The normal range is 8.7-27.2 mg/l.
So if yours is similar, 115 on this scale seems HIGH to me.
Any other blood test that I have taken in my life, if it is out of range, the doctor tells me it is a problem. Why not b6 too? Because it is water soluble, so it is no problem? Well this has been proven incorrect, because the extra b6 stays in the body, unsecreted in our (I THINK) muscle and or fat. Therefore it takes a longer to secrete then previously thought. Then after it is secreted, ONLY then can the body recover from the damage. Otherwise, the extra suppl b6 will continue to store inself, and the damage can continue - the body unable to secrete the b6. Sometimes, some of the damage can not be fixed. So, if you take it for a long time, it is only logical you become toxic.
I never took huges amounts and my blood work came back as 568 mg/l on the 8.7-27.2mg/l scale. I was taking b6 as part of other things for many, many years. So I guess I slowly toxified myself.
Your Neuro is wrong. They only have to search on the net for information. And if they are doctors, they have access to tons of medical literature that will tell them of the toxicity. There is literature about this problem from all over the world. I have seen articles that were in French, German, Hebrew, Dutch and English. Check with the medical schools in Holland, and see if you can do a search for literature even though your not a student. I think it would be more open then in the States. You can read English, is there another language you can read? Read any languages you can understand. OR just take these articles to your doctor.
Have you done a google search? Even in Dutch. Give it a go, and see what comes up!
I just looked, here is one of the Dutch articles:
Ziekenhuis Gooi-Noord, afd. Neurologie, Rijksstraatweg I, I26i AN Blaricum. email@example.com
• Ned Tijdschr Geneeskd. 2006 Feb 4;150(5):277; author reply 277.
• Ned Tijdschr Geneeskd. 2006 Feb 4;150(5):277; author reply 277.
• Ned Tijdschr Geneeskd. 2005 Nov 12;149(46):2545-6.
2 patients, men aged 60 and 65 years, presented with symptoms of chronic sensory polyneuropathy. Symptoms in the first patient were bilateral numbness in the hands and leg pain and, in the second patient, painful tingling in the legs. Pyridoxine (vitamin B6) toxicity due to daily use of multivitamin supplements was diagnosed. ****The patients were taking 24 and 40 mg per day, respectively. Neurotoxic syndromes due to pyridoxine overdose have been described before in patients taking high-dose vitamin B. These patients mostly developed progressive sersory neuronopathy with sensory ataxia. Chronic sensory polyneuropathy has not been associated with the use of vitamin supplements, which have previously been considered harmless. Both patients recovered after discontinuation of supplement intake.
GET IN TOUCH WITH THIS DR. MAYBE HE WILL WORK WITH YOU.
Sorry, I meant to say in my earlier posting that I retook the B6 blood test – I have not started to take B6 again and I never will knowingly. My B6 blood level in March was 64 and my neurologist said it should be 5-30. By May – six weeks later – it was down to 16, within normal range. I had cut out all supplements, and was going heavy on the wine with dinner since I heard that helped eliminate B6 from your system. But of course, as you all know, my symptoms are still very much with me.
Heimen – I only took 15 mg of B6 daily in multivitamins for quite awhile, and my symptoms began in January this year. I am grateful that the neurologist at Scripps San Diego tested me for it when I went to him with my symptoms. I had never heard of B6 toxicity until he told me about it. He said neurologists are seeing more and more of it since Americans are so addicted to vitamins. I had searched the web for muscle fasciculations and found only things relating it to either being a horrible disease (MS or ALS) or a psychological problem. My symptoms evolved into much more within 6 weeks, when I started to have constant tingling, needles/pins, minor numbness in extremities. That’s when I got serious and went to a neurologist. My family doctor was clueless about B6 and only tested for electrolyte levels.
Very glad to have found this site – it gives me hope that eventually symptoms will recede and perhaps go away completely. Now I’m debating whether to reintroduce calcium, magnesium, D3, folic acid back into my diet. I see lots of pros and cons on the post here.
I am 30 months out after starting detox. I have had acne, rough skin on my face and arms (is clearing somewhat now), and bolder blue veins on my wrists and hands. My left side was affected more severely and the veins on my left wrist stand out more than the right side. I can also see my pulse on my left wrist most of the time. It wasn't like that before. I have lost hand strength. This whole ordeal is a real yo-yo thing. I have gotten better, but still have a ways to go.
Could Beta Blockers add to peripheral neuropathy caused by B6 toxicity?
I started 25 mg Atenolol several weeks after my symptoms from B6 toxicity began. After 1 month on Atenolol, I googled beta blockers and peripheral neuropathy and found that it could be a rare side effect of taking Atenolol. I stopped the beta blocker immediately.
Does anyone have experience with this, or any knowledge about it? Again, my doctors seem clueless about many things, including this, and I’m reluctant to start any new medication while dealing with B6 toxicity. However I probably should be taking something for my Stage I high blood pressure. Any thoughts?
These are a few natural remedies to help blood pressure. Can you see a NATUROPATHIC MD PHSYCIAN? Perhaps you use a natural alternative since it is STAGE 1, assuming this is 'the begginings of high blood pressure', and assuming your weight, diet and exercise are in good measure...
CoQ10, Garlic, Hawthrone, Fish Oil, Folic Acid, Cal/Mag/Potas, perhaps Ayurvedic or Chinese Med...that is all I can remember for now...
I actually take some of these to assist in my b6 toxicity recovery.
A NATUROPATHIC MD would be a good start...
Also, my mother has had muscle fascilations, and they diagnosed her with fibromyalgia. She had it for YEARS! Though now after what I have been going through I keep trying to get her to check her b6.
Thanks! I thought I was crazy. I have always had 'bold' veins, but I swear my veins seem even bolder. Everywhere, but especially on my ankles/feet! I think I have gotten more spider veins, popped blood vessels, moles, dry skin, and even greater sun sensitivity from all this!
By the way. There is a site by a physician or naturopathic phy, I can not remember, a Dr. Mercola. Very well known. Anyway he sells a vitamin that seems to have a more reasonable amount of b6 in it. So if your FAMILY MEMBERS need a vitamin, perhaps that is a safer alternative, so they don't go through what we are all going through!
Tanks to both of you. Your post help me very much.
My bloodlevel B6 was 115 Nmol. In Holland the highest level for healty people should be not over 110 Nmol.
Since I stopped in febr 2010, there is much more pain an burning, but also I feel some life in parts of the skin upside my big toes. So I live between hope and fear. Sometimes, during the night I dream that someone is carving in my toes with a sharp knive. When I wake up I feel that there is sharp pain in my feet. Signs of recovery perhaps??!!
The depression I became in april supprised me very much. I am a policeofficer and had in the last 35 years many extrem experiences, many death people, shootings, last year the attack on our Queen where I and my man stood near,but never became depressive or hopeless.
So it must be in realtin with the detox.
Awfull dreams, recognize??
But the postings of you give me new hope.
I will contact the doctor you mentioned.
Have a good time and I realy hope and pray for your recovering.
Blessings from Holland,
Oh, yeah, depression too, which usually lefts. But if it doesn't, don't hesistate to seek help. Perhpas the vits/b6 vits keep your mood more up? Maybe there are other alternatives for you to help you.
And of course, it is a VERY ROUGH process, so depression and anxiety to me are very natural things to occur.
thank you for your support.
My boss offered me free help of a psychologist, it feels good. I have a very good wife children and 1 little grandson, so that is also of some help.
But what I fear the most is will it will come to an end someday. Or am i fooling myself thinking that it will be cured someday.
Lets go for the best.
The last week, the awfull dreams seems to dissappear little by little, but sleeping trough the nigt is not very good yet. But maybe they come and go. It is good to know that if so.
Well I am going out in our lovely garden now, doing some planting.
God bles you all!! I keep on praying for you.
A new try to write down my symptoms. Much moore weakness. It starts in the morning and it feels like I just ran the 40 km marathon. This I had not before stopping B6.
More pain and burning, mostly in the evening, sitting in my chair. Sometimes stitches like a knife cutting.
Yesterday in my upperleg an electric spark went with speed as lightning toe a numb part of my great toe. Very painfull. Maybe a nerve got connected?? Hope so. The bad dreams seems to dissappear en I sleep a bit better. So I am less tired at this moment.
Sometimes a part of the skin on an arm or head seems to burn a littlebit even in my mouth were slight tinglings. Not very often. i don´t like the pain, but if they are symtoms (symptoms) of the recovery, welcome!! Bizarre isn´t it.
thank you for your support,
greetings en prayers for you and all who suffer from neuropaty.
Last night again horrible dreams, you were right, It comes and goed.
I also felt live in the numb part of my feet,..this morning, nearly gone.
Pulsing under my feet, weakness, but the sun is shining here in Holland.
My grandson of 8 months was just laughing at me, that might be of great help.
How are you doing.
I hope you all have a good day today.
Jennifer – by all means have your mother get her B6 levels checked – my doctor assured me it is one of the symptoms of B6 toxicity. My muscle fasciculations (calves and feet) began on the 1st of January (this year) almost immediately after getting off a non-stop flight from London to Los Angeles. They continued unabated and in late February, I began to have symptoms all over my body, including paresthesia (abnormal skin sensations such as tingling or tickling or itching or burning) usually associated with peripheral nerve damage) and hyperesthesia (abnormal increase in sensitivity to stimuli of the senses). Also some minor numbness in toes.
I was diagnosed with B6 toxicity in late March and stopped all supplements then. Now, almost two months later, I have days where my symptoms are still strong, and others where they are practically non-existent. My levels of B6 never got as high as some of you on the website, I guess – measured at 64 when I was diagnosed. But my neurologist said there is hope they will completely disappear, and even if they don’t completely, they will heal considerably. I believe that is true for any of us with B6 toxicity. Have hope, Heimen.
Does anyone recognize this: In the morning, just stepping out of bed, all numb parts are realy numb. In the evening they seems to come alive? Aret hese part of the recovery or does this belong to every neuropaty?
I have been reading your posts. I am sorry to hear you are suffering so much. This forum has been so helpful to me and I hope it is helping you. My symptoms began over 4 years ago and I finally got a diagnosis last November. I saw many drs who could not figure out what was going on. My levels were 139 and now they are a normal 12. I have burning, stinging, numbing, aching, bones, ligaments snapping, popping and cracking. I hurt from head to toe. My worst symptoms are in my teeth, tongue, roof of mouth and jaws. It is chronic burning and stinging even pulsating at times. My head feels heavy and I have bad headaches at times. Then two years ago, my hands and feet started tingling and feeling numb. My feet get so numb that I have difficulty walking at times. About that time, my bones and ligaments started cracking and popping. Last year I started developing unexplained muscle aches and soreness. And yes, when I get out of bed in the morning the numbness and soreness is worse, especially my feet. I have a hard time walking in the morning and I ache all over I have to take an aspirin to ease the pain.
It has been recommended by a respected world renown dr to take aceytl L carnitine with alpha lapoic acid and Omega Fish Oil-DHA twice a day as well as Jarrow's methyl B12, the sublingual form and B-1 for nerve healing. Avoid ALL B6 supplements and stay positive.
This is an excellent forum and we all care about each other and encourage one another.
I hope this info will help you. Keep me posted :-)
For me, the pain is worse at the end of the day. It's definitely related to the foods that I eat during the day which have B6 in them. My hands and feet tingle but that's nothing compared to my breast pain. It feels like someone's shooting a nail gun into my breasts. The only thing that lessens the pain is compression. I wear a very tight sports bra over my regular bra at all times.
Here is a good link showing foods high in B6. These are definitely the foods that cause me pain. If I avoid them, I'm not in as much pain at the end of the day:
thank you very much for support, it realy is of great help for me, because my doctors don't know anything about Bt toxicity.
The pain comes and goes. Sometimes it is gone. I am happy that I can walk very good.
The damage is very ligt, my neuro told me. Every day I check my numb skin, is it coming alive. But I also know that is realy not very wise to do, because one day there is some live, the other day it seems to dissappaer. Recognize?
Did anyone of you become pain and burning in numb parts after stopping taking the vit. This is remarquable to me. Because before stopping, I felt the numbness, but actualy less or no pain. Strange ilness.
Dear sisters in pain, thank you for your postings. I pray for all of you, every day!!
greetings from Holland, Heimen.
Is anyone of you being poisoned by using B6 in it's most effective form: pyridoxaal-5-phospate?
Ik read on the internet that there are tree chemical forms of this poison, pyidoxaal-5-phospate should be the form that can pass the liver directly. I used this form for many years and took 15 mg a day.
Does anyone of you know how long this form B6 stays into the blood, hours, maybe days?
After I stopped there were high amounts of B12 (790) and B11 (28) in my blood and also too much of B6 (115 Nmol)
So who used this form of B6 also, for how long and what was your first sign of poisoning?
About 5 or 6 years ago, I now remember, I started feeling if someone put a guitarstring around the little toe of my right foot and I also started walking like a drunk person. Ataxie!
greetings from Holland on this sunny day, wich is also my birthday,
Happy Birthday Heimen!!!!
My first symptom was a tingling sensation across the tip of my nose. It felt like a worm was crawling underneath the bridge of my nose. Also, my top and bottom front teeth felt sensitive as if I had no enamel on my teeth. At the time, I was taking either a flinstone multivitamin or centrum, I don't remember exactly because for over 3 years I thought the cause of my pain was the ambien that I was taking every night (by the way, ambien causes nerve pain and there is forum like this were patients rate the drug and how it has affected them, and many, many people were having crazy issues such as nerve pain like I was experiencing), so as I was saying, I never thought about a children's chewable vitamin which, by the way I had been taking since 2004 and had no problem, so that left the ambien as the probable cause of my neuropathy. Over time the sensitivity turned to chronic and severe nerve pain like my teeth nerves are on FIRE!!! It never stops and then my tongue and the roof of my mouth and gums started to burn and sting. Drs thought I had trigiminal neuralgia but that was eventually ruled out. Over the years I saw many drs in different fields and I was not responding to any form of treatment. Frustrated and continuing to get worse where I had to quit my job because the pain got so bad, I finally decided I would go to the Mayo Clinic. Finally I got a diagnosis of pyrodoxine poisoning.
I never heard of it and neither had my family dr. As I share my story with nurses and other drs, I am shocked and amazed of how so few drs know about this condition. The info is out there, they just don't read it. I know I have gotten off track of your question but over the years new symptoms continued to develop. The first yr was only teeth pain and oral burning. Other than that, I felt great!!!! By the second yr, my hands and feet, arms and legs started to tingle, burn and there was always numbness. My head started feeling heavy and I also was started to get head pains everyday which continue to this day. By the third year, my bones, tendons, ligaments (whatever) started snapping, popping and cracking at the least amount of movement. It started in my elbows and neck then my hips, rib bones, knees and so forth. There is no pain just alot of noise LOL! The end of the third yr, my muscle ache and feel sore for no apparent reason and my feet hurt as if I ran a marathon.
I am almost afraid to wake up and find a new symptom. Oh yes I forgot, at times tiny areas of my body will sting for about 1 or 2 seconds. The stinging mostly occurs in my arms and legs or torso.
It has been about 6 months since I stopped the B6 except for one month when I took something called the Nerve Support Formula that contains small amounts of B6. I stopped that a few months ago. I still see no change yet. My levels were 139 and I found out in Feb, they are a normal 12.
So, that is my story. That is how it all began. Coincidentally, this all started the very same month I went into menopause. Coincidence? Not according to my dr of oriental medicine.
He sees a correlation between the menopause and my liver is blood deficient and therefore cannot metabolize the B6. He is correcting those issues but it is a long process.
Hope you have a fabulous birthday! Write and let us know how you are doing........
Bye for now!
Hello everyone. Hope everyone is having a good day.
Heimen: EVERY SYMPTOM, everyone, you have ever wrote about, according to what I have read, and have EXPERIENCED MYSELF, is a b6 detoxicity symtpom. And they all get worse as the day goes on. Since you only started detox earlier in this year, you are still at the beginning, so HANG IN THERE!
From what I understand DETOX ONLY BEGINS when your levels become normal. So we never know exactly what day that is, do we...but we can estimate, and it is 7 months from that date notable change is seen, assuming no supp. (vit or food) b6 is consumed.
Also, I was told the half-life (http://en.wikipedia.org/wiki/Biological_half-life) of B6 is a week or two. So maybe you can figure out.
And I remember waking up numb, then it turns to shocks/pricks...etc...during the day...gradually worsening at night. It makes ense. Your body slows down while you sleep, then wakes up and tires during the day, then night. Especially with our extremeties.
HAPPY belated BIRTHDAY TO YOU!
Thank you very much for all the good wishes you gave me. Yesterday it was a good day, although the visting from my children, grandson, my old 87 year old mother and a few friends made me very tired. But the most important thing is that they came and brought their love and good wishes.
Well, reading all your stories, maybe I am untill now, a lucky guy, but maybe it will become worse and worse. Time will tell me.
It is a great help for me reading all your stories an giving all the knowledge about this hoorible disease. My fam.doctor is of good will, but asks me often, when the B6 poison is the cause, why don't I see lot of more patients suffering with this disease? Now I know fam doctors in the States also don't know very much about this hughe problem
I hope some day we can all post the announcemnet: I am recovered!!!!!! On our way to that moment, it is good to inform and encourage each other.
Today, you encouraged me again!! Tank you for that.
Greetings from the country of windmills, tulips and cloggs. (although we don't wear them)
Holland is a lovely country.
My husband's sister married a dutchman!
The kids are VERY PROUD of their dutch background.
They will most likely go to University there.
The family has come and gone from there for years!
His family is still there.
Anyway, HANG IN THERE!
Scanning the internet, it seems that pyridoxal-5-phosphate seems not to be toxic, but I took that in amounts of 15 mg each day for many years, and I am now suffering with neuropaty.
Is anyone of you been poisoned by using this clear form of B6?
Please post your stories!!
I have been slowly experiencing increased pain in my feet and lower legs in the past 6-8 months, but the worst has been since mid March. I had blood tests done for arthritis, lupus, auto-immune diseases - all came back negative. I was referred to a neurologist. He did a nerve conduction test on my legs/feet and a EMG to check the muscle velocities. That was all within normal limits. The only thing that he found was no ankle reflexes when he tapped at my ankles.
So the neuro doc ordered an MRI of my spine since I did have a back injury when I was 11 yrs old. The MRI showed spondylosis (arthritis or degenerative disc changes) in my back. I talked to a neuro/back surgeon and told him my symptoms. He said that the pain would go from my buttocks all the way down my legs. He asked me what else it could be. I told him I have been taking B6 200mg for 7 years. He said, "You've got your answer! You have B6 induced neuropathy!" I did ask my primary doc and the neuro doc to check my B6 level, but they wanted to find the more obvious causes for THEM.
So after reading all of your posts, I'm almost 100% positive I'm having B6 toxicity. The only problem is I have mthfr, which is a high risk for heart attack and stroke. That is the reason I was taking the B6, as well as B12 and folic acid. It looks like I will have to see a hematologist in the near future to figure out what I can take in the place of the B6. I sometimes get depressed about the pain and want my legs to be chopped off!
It sound to me like you definitely have B6 toxicity. It took me 4 years to get a diagnosis, but I finally did. I would recommend you stop immediately, taking the B6. From my experience and from what others have said based on their experience, it will only get worse.
Make sure you stop taking ANYTHING with B6, even cereals have high levels of B6. I have been told that foods with B6 are generally safe especially if they are cooked, but everyones different.
I had a dr recommend taking acetyl-L carnitine and Omega fish oil-DHA as well as methyl-B12 and B1. It usually takes up to 6 months to detox and another 1-3 years for complete healing. And the first yr can be really tough.
That would be my advice to you. I am sorry that you are having a rough time, but this is an excellent forum with which to learn and encourage one another as well go through the difficult times.
Hope this help :-)
Please stop using that stuff. I think you have no other choice. Don't let your nerves further destroy.
I wish you all the luck and strenght. This postings are greet help for me, hope they are also helping for you. (soory for my had English, but I hope you understand.
I now feel pain in the numb parts of my feet, not the whole dag, but espescially in the evenning.
Those numb were were painless before I stopped. Does anyone off you recognize this were these signs the first messages of recovery for you?
Anyone found out something about the B6 form pyridoxale-5-phopsphate? Did some of you use this biological form of pyridoxine?
Hi! Don't feel bad about asking questions, that's how we learn about this bizarre conditon.
With regard to hypoglycemia, personally I have not experienced that, but I have experienced some very strange and unusual things. Maybe someone else on the forum has and will write to let you know.
What kind of B6 did you use? I got mine from taking flinstones or centrum, don't remember which. Some people got it from taking a prescription.
I hope this helps you.
Hello, thank you for your posting.
I took a multivitamin cold VITAMAX. In this multi is 15 mg pyridoxal-5-phospate, the most active form of B6. I took this for 8 to 10 years each day. In my blood was 115 Nnmol/l B6.
Some say this form is not toxic. But the strange thing is that after 6 weeks, after I stopped using Vitamax, I fell into depression, anxiousness, nighmare's, burning, stabbing, weakness in my legs en since 2 weeks also in my arms, hypoglycemia.
After I stopped, the first weeks I was extremly thirsty and drank a lot of water, This has stopped.
My nighmare seems to be dissapaer and my sleep is better.
mthfr...yes, i can see why you care concerned. but i really think you need to get off the b6. who manages your care currently? relative to the mthfr? can you somehow organize some care for yourself with whatever specialties you require, but ALSO include a naturopathic MD too. what is your diet like? what supplements are you currently on to manage the effects that mthfr has on your body, such as the high homo. levels. i understand your on b vits, anything else?
WARNING! when you get off the b6, you may experience lots of discomfort. also, monitor your homo levels. i am concerned if the b vits were managing this issue for you, you really need need to see a some sort of alternative doc MD to manage your stopping and withdrawal of the b6. if you don't have to do it on your on, don't.
but i think you have to go off, or you will cause your self terrible damage...if this is the problem.
hypoglycemia. no not really. i do not think so. but b6 is critical for maintaining proper blood sugar levels.
FROM INTERNET...You use active B6 to release stored glucose (glycogen) from the liver, for converting protein (amino acids) into sugar, and for releasing fats for energy. People without adequate activated B6 often feel light headed or dizzy about 3 hours after a meal, since this is when the body begins to run out of glucose from the meal and begins to release stored glucose. Energy levels and ability to concentrate may drop off dramatically after about 3 hours.
If you are dealing with this problem during recovering, perhaps you should eat smaller meals throughout the day. This way you don't have a sugar overload, and can maintain your energy levels. Certain foods are better for this...i think protein. Perhaps a protein food, with a b6 source too! But you can read about it on the internet, or talk to a nutritional counselor, to set you up with a temporary program. Perhaps, also give you advice on other ways to control sugar flucuations....via diet...stay away from foods that will spike your sugar. You want stuff that will rise a SLOWLY and go down SLOWLY.
i have delt with cycles of discomfort and exhaustion. i think this is why i am exhausted...of course my hormones are involved...estogen, progesterone, thyroid, etc... but also this...my thoughts...i mentioned the 'cycle of recovery' before with the nerves. well, the nerves at some point, start to go crazy, i think this causes many symptoms and problems, but this causes inflammation which changes body temperature change (rises), can cause some chills, and then also exhaustion. of course, as a women, my hormones play an integral part is all this, but perhaps you are suffering from some form of this too???
Thanks for your support.
I don't take much sugar, also coffee is bad. Not too much!
Indeed sometimes it seems the nerves get awake and try to do strange things.
What I am also searching for is experience with numb parts in feet,..how does the recovery take place. First pain, or just the feeling is back. (nice wish isn't it?)
Sorry to read that you's exhausted. And still you support us, great.
It is a very strange ilness.
Well, numbness could mean 2 things, dead nerves, or nerves that have not recovered yet. My left foot had lost a bit of sensitivity, but is gradually coming back. SO DON'T PANIC. You are only at the being of recovery! Remember give yourself at least a year.
Also remember when I wrote about the cycle of recovery for the nerves. I WROTE something like this...Tingling, then perhaps a stronger prickling, then perhaps a stronger zapping/shocking, then perhaps a nerve pain or stabbing, then perhaps muscle fascilations and nerve pulsing, then perhaps muscle aches, then done. This will happen in your foot. The muscle pain, stabbing pain in the foot/feet for me was/is the worst. It reminded me of the cramps I got at pregnancy, when the doc suggested I take calcium. But they hurt! It is a sharp stabbing/cramping pain, then it goes away. It usually comes now for me when I am still. Others, had severe foot pain all the time. So, don't panic if you have foot symptoms, stong ones, don't worry! THAT IS GOOD! That means your nerves are waking up and recovery! I know it is crazy, but you want discomfort and pain (in a way), more the numbness!! If numbness stays, then the nerve(s) are damaged...
Did I answer your question?
Hang in there! Recovery is slow, put it is POSSIBLE!
That is good you do not eat sugar. But certain foods also raise blood sugar. I think some good simple rules is watch the 'starchy foods'- rice, potato, breads. pastas. Also, tropical and citrus fruits elevate blood levels greatly - also the juices! OJ is one of the worst! Some veggies to, like peas. All this is on the internet.
Hello, thank voor your courage, I will try to hold on. Today is a worse day, not because of pain, that is today (until now 18.00 in the afternoon) not too much. It is today the feel of fear. Why, I don't know, but it is there. I comes and goed like waves on the sea. Waiting for better days.
Thank voor your support, I appraciate this very much.
The numb part in my feet are sometime burning, so they are still alive. That gives hope.
Thank you for posting me.
You commented on your oral pain. Do you have pain in all of your teeth? Is it chronic and does it feel like nerve pain? Has it gone away?
I also have been experiencing trouble with my jaw and ears and difficulty talking as the muscles that allow me to open and close my mouth seem tight and there is a great deal of pressure. All of this in additon to horrible burning mouth.
Has anyone else experienced this? I would like to hear from you.......
Has anyone on this forum and suffering from B6 toxicity apply for disability? I have not been able to work for a year because of my condition. I am single and I was initially denied.
I have filed and appeal. If any of you are receiving disability, I would like to hear from you!
NORMAL. YOU ARE NORMAL. Yes it is INCREDIBLY FRIGHTENING!
I was in and out of panick constantly.
My suggestion, if you feel a panick come on, distract yourself.
Do something, read, watch tv, go for a walk, do an errand.
The panick will pass.
Burning, yes. For me mostly in my lower body.
Is there a PAIN MANAGEMENT GROUP in your community.
That might help.
Group of people get together providing support during physicial crisis.
thanks for your powerfull words. They help me very much to keep the faith that realy B6 is the cause of my neuropaty.
This maybe sounds strange, but from the time my neuro told me to go home an live with it, because there is no cause found of my ilness, I cannot clear my mind from thaqt curse. Although she also said she doesn't know anything about Bt toxicity, I is hard to leave her words behind me.
Are there neuro's on this site?
If it is B6, there is a solution and there wil be a good end of this. If B6 is not the cause, were will I end? Understand my doubts and fear? Fear is a very nasty and ugly feeling.
I know, nobody can tell what the future will bring, but often I would like to see over three years, for us all.
But your encouragement and all the symptoms we all can compare, are my hope that it realy is the B6. ( I hope you understand this horrible English.)
The problems with the glucose in my blood come and go. Indeed more small meals, less coffee a day ( no more then 2 small cups insteed of the 8 I used to drink,). It is strange because before I started using multi's, changing glucoselevels in my blood were also a big problem. During the time I used the vits, lots of years, I only now and then had this problem, only a few times a year. Old times return.
Indeed the internet tells us that B6 is also responsible for a proper delivery from glucose from the liver. So the withdrawal of the high b6 level must be the cause of this.
TO ALL: The party in my feet mostly starts in the evening. Tingling, stitches, electricity, buzzing under my feet. Also pain in the numb parts of my feet. That is new and I am happy for that. It is strange someone is waiting for the pain, because this might be symptoms of recovery. Sometimes my feet feel calm and not much is happing, as sudden there is pain.
Sometimes I feel stitches in my fingers an a slight burning pain on part of the the skin on both arms. I never felt any pain in that part of my body during the use of vits. Strange.
ATAXIE: Another strange thing: from the time I stopped using, my ataxie left. It very strange to feel that one is able to walk a straight line. For over more 100 meters I can walk straight now. Even my wife mentioned this.
Did anyone of you mentioned this, ataxie (walk like a drunk person) dissapaered after quiting B6?
Is anyone of you familiar with returning reflexes in knees, ankles (Achilles) and at what moment could you feel vibrations again on feet and ankles?
During the day, on very unespected moments, there is awfull weakness in my legs. Sadness and anxienty comes and goes, althoug the deep depressive moments seems to have gone. Also my nightmares kept away for several nights. I am very gratefull for that.
Still searching for people who were also poisoned by using the most effective form of B6, pyridoxal - 5 phosphate.
Please look upon your vits and reply.
I 'pray for you all.
Greetings from Holland, were Spring is bursting out of trees an flowers.
Almost forgot....Ataxie is a symptom that is suppose to dissappear soon after stopping.
I had difficulty walking, in a strange way. My hips and buttucks were constantly 'malfunctioning', kinda cramping. I am not really sure how to describe this. But this feeling is pretty much gone. Perhaps the Ataxie did not progress any further, because I was swimming 3-4 times per week.
I didn't know that ataxie would dissapear so quickly after stopping, but it realy does. As I wrote, I walked sometimes like a drunk man, like a sailor who had to long on his ship, but I don't like water. Happy that this is gone. Glad yout ataxie pretty much is gone.
Just came back from my priv docter. Although he doesn't know anything from B6 toxicity, he is very cooperate. Today my bloodlevel are tested in B6, B12 and B11 (acid) I am very curious what levels are found. Next week I can call him.
Now I remember I also had musclecramp, especially during the night. Until now, thoese cramps are gone to.
Now, mostly in the evening, sometime I feel severe pain in the numb parts of my feet. Not very funny, but I can manage this pain.
Sometimes I can feel the skin again a littlebit, mostly it is numb, ....weird.
Did your reflexes return, including the feeling for vibration in ankles en feetbones?
Did you also have the feeling thaqt you were walking on thick cushions unbder your feet, and if so has that dissapeared yet?
Now I remember thtat the first sign of toxicication was the feeling that someone had put an pianostring around my right little toe. That was many years ago, it must have been in the same poeriod I developed ataxie.
All the jigsaw pieces seems to fall into the right positions now. (understand what I mean)
Well, thank you for your great answers and knowledge about these things. It is of great help for me.
Oh yes! I remember that 'cushion' in my left foot! It felt like my foot fell asleep and was never going to wake up. I could walk, but boy did it feel weird, NOT PAINFUL, but uncomfortable. I had that for months, and it started making it's way up my leg, then I figured out what it was, and stopped the b6. I defintely still have nerve issues there, but the 'cushion' is gone.
Reflexes return to normal. But you may experience sore muscles and ligaments. Because if their nerves that control motor function, they are a bit angry! :-)
My first noticable symptom, was severe shocks in my left big toe! So I guess, that is when your body is saying, WAKE UP! Something is wrong!
I am glad your night muscle cramps are gone. Mine are not. I got them up and down my legs. Last night, my hip muscles were twitching and cramping. Pain I woke up to, but also could manage and fall back to sleep. But I DO PREFER to sleep through the night, not waking up to body functions!
Since you seem to walk well now, maybe you can start to take small walks with your wife? Holland has many beautiful walking paths!
Well I used to drink lots of coffee, 6 to 8 cups each day. In weekend I got a headache because this was the weekenddetox from caffeine. Caffeine is causing hypoglucemy sometimes.
Now I drink only two cupsnormal coffee, further on only grean tea or decaffe. It helps, but today I was again in hypo. I think this has releation with the weakness, but I also sometimes have weakness in my legs and arms without feeling that my body is in hypoglucemy. Coffee is also bad for good sleeping.green tea protects the nerves.
No problems with my nails, but I am only 4 t 5 months in detox.
Hello, Tzennifer, hope you have a good time in Greece.
When did you first experience that your reflexes had retuned?
And when did you first felt that the feeling walking on cushion dissapeared? Was that before or after the numbness dissapeared?
Anyone else with those experiences?
The weakness in my legs and arms is remarquable. Although my muscles do their work very properly, it feels tired an tired.
Sleeping is a problem. Also the mood is like a swingmill. Good bad, very bad, good bad etc.
How do you know your hypo? Do you have a blood glucose tester?
In the beginning months is when the normal walking returned.
I think I did tell you, I would test my senses in my feet myself, with a pin or some other pointing object.
It was clearly obvious, I had lost some in my left foot.
I could definitely feel, BUT my left foot would not curl up like my right foot.
The cushion feeling definitely disappeared first, before I started getting the complete feeling back in my foot. I probably felt this cushion, because my nerves were crying for help. The b6 nerve destruction process has progressed. But thankfully, I figured it out, and the healing began, though it has been slow and uncomfortable! My feet now curl much better when touched with a pin object, though I get different nerve feelings in my feet, especially my left.
Well the weakness in unfortunate, I have it still too, though it is getting better, slowly. I figure since my blood was WAY HIGH -- WAY, WAY HIGH...and normal levels were achieved in Jan. So I started my 7 months from then. My 7 month is August. It is getting better, as the nerve discomfort is disappearing. Which I GUESS is logical! The nerves conduct the muscles, so if nerve(s) discomfort disappears, that means the nerve(s) returns to normal function, able to tell the muscles what to do, the muscle aches would decrease. Not the greatest explanation, but you get the idea.
Hang in there. You know what helped me. A nice swim in WARM WATER, not cold, followed by a WARM SAUNA. I felt good there. I also like a WARM WATER BOTTLE, at night. That is one of the reasons my gut said it was not MS, because heat usually make MS symptoms worse, I felt better. I also used KAVA and St. John's Wort for anxiety and sleep problems, oh yea, BACH FLOWER REMEDY. It seemed to work for me. If I was truely desperate, I used ANITHISTAMINE. They actually tell people with nerve disorder have had some sucess with antihis. in helping with nerve problems.
But if you prefer, confer with your doc about all this...
Did I answer everything?
Καληνυχτα! Good night!
Hello Jen, Kalispera (greek for goodevening ...so I hope)
Thank you for your answer and your experiences. Well I don't have a tester, but I am familiar with changing glucoselevels in my blood. They dissapaered mostly during the time I took multi's. Only now and then it came back after drinking by example lots of coffee of eating food with lots of sugar in it. Now during these times, I feel more glucosewaves in my body. And I read on the internet that B6 does a lot with glucose. You also mentioned it.
My personal problem is the fear that comes and goes inspite the medicine my priv doctor gave me.
How are you doning with those things?
I asked my neuro, is this MS, she defintely told me: NO, this is not MS. The most MS cames between ones 35 and 45 years.
My worst area seems to be around my priformis muscles, hips, thighs.
This is the area I actually had difficulty with walking, for a very long time!
Constantly, constricting on me, painful.
Kinda like jolly horses.
Anyway, I have been getting cramps there, on both sides, out of no where.
Still have nerve sensations there too, of course, tingling, pusling, zapping, twitching...
When I am awake, or asleep.
Did/does anyone get cramps out of no where, anywhere?
Yes, Jen. In my left foot (arch) and in my hands for no apparent reason. I also experience sensations like I am being stabbed with a fire poker in my arms, legs, torso. The burning experience only lasts a few seconds. Or I get the sensation that someone is stepping on my toes. WEIRD OR WHAT????
Does anyone know of a dr who has done extensive research in this area because the Merck Manual and other articles written about this doesn't scratch the surface. Most of us are experiencing symptoms beyond the ones mentioned in all of the literature that I can find on this subject. Does anyone agree???
Absolutely I agree!
I have not read one article, that really gets to the core of what it does to someones body. They say a person "recovers" in 6-7 months. NOT QUITE. Maybe if they were disabled, and were not able to walk properly (ataxia??), but the remaining recovery is very difficult and PERSONALLY has effected my body in SOOOOOOOOOOOOO many ways!
By the way, I had the pain in my foot arches too, that is now pretty much gone. I guess I am moving on to more and newer symptoms.
Is someone familiar with sudden oncontrolled movements (spasm) of one of the arms?
Please reply and tell me your experiences. How long did they last, one arm, both arms, maybe legs etc etc.maybe you can tell me how long a go you stopped using multi's?
I stopped in februari 2010.
It made me very affraid, because never had this before. Awfull.
slight, indeed when I was still, just falling asleep in my chair, but I never had it before.
Do you recognize some periods during the day that the nums parts, just round the edges begin to burn and stich.
For me mostly during the evening, when I am still sitting in my chair.
The depressive feelings are happily fading away. Feels good, the anxienty still there.
Thank you so much for this thread. I got really lucky tonight. I posted a status on Facebook asking why my arms felt heavy and I kept dropping things, and my friend Steve posted a reply guessing neuropathy.
I then read about neuropathy on wikipedia and saw that it can be caused by overdose of vitamin B6! Then I read about vitamin B6 overdose:
"Vitamin B6 is usually safe, at intakes up to 200 mg per day in adults. However, vitamin B6 can cause neurological disorders, such as loss of sensation in legs and imbalance, when taken in high doses (200 mg or more per day) over a long period of time. Vitamin B6 toxicity can damage sensory nerves, leading to numbness in the hands and feet as well as difficulty walking. Symptoms of a pyridoxine overdose may include poor coordination, staggering, numbness, decreased sensation to touch, temperature, and vibration,; and tiredness for up to six months."
I have been taking amino acid supplements for the past 14 months, for depression. They worked - I'd been depressed continuously for 25 years and I had a remission. The depression returned last fall after a period of intense stress, and I've been recovering since then. I do recommend amino acid therapy for depression before any antidepressant medication.
But tonight I realized that the amino acid supplements have B6 in them. So I went and checked how much B6 is in the supplements I am taking! The amino supplements alone give me 210 mg per day! And then I've been taking a B complex on top of that that gives me another 220 mg per day! Jesus!
I guess it beats a brain tumor or MS. But still.
I've been dropping things for a few months now at least and had no idea why. I thought it was middle age - I turned 41 last week. And with my history of depression, fatigue has been so much a part of my life that if the B6 was causing it, I wouldn't notice. I'd just chalk it up to the depression. Anyway, I'm going to quit everything and see if I can find aminos without B6. And I'll try some of the other things I've read here. I'm encouraged to read that recovery is possible, and I'm so glad I caught it before it progressed any farther. I'm a bit disturbed that the doctor who prescribed the aminos didn't warn me about B6, but he had wanted me to get them from a compounding pharmacy, and I decided to put together my own regimen from over-the-counter supplements because it would cost $80 a month instead of the $120 the compounding pharmacy would charge.
Tzennifer told me that prickling in the face, is a sign of B6 toxicity. This is of great help for me!
Is anyone else familiar with these experience and did your doctor can confirm that this is a special sign of B6 toxicity?
I was told b6 was a sign of b6 toxicity from another sufferer. And of course as a sufferer my self, I told Heimen, I grabbed onto that, because it was 'HOPEFUL'. That symptom has disappeared for me. But I acutally have a question relative to this facial shocks/zaps/stabs...
HAS ANYONE EXPERIENCED ANY DAMAGE WITH THEIR EYES.
I notice now... I see a sometimes just a few "floating spots" in my eyes and a "gray line" like a piece of lint in my left eye. A type of photosensitivity when suddenly entering into a brighter space, or swimming in a pool, with the reflective light under the water with my goggles. Does anyone understand? My eyes gotzapped/stabbed quite a few times inside, so I was wondering, did this cause this, or is this nont related and I am just paying attention now to something that may have existed before...
please write down all your experiences with recovery!! Looking for singns of recovery.
Such as as Jen wrote about her eyes, prickling and tingling on the surface of your head!
Did any doctor or neuro told you thtat these signs were realy siging of b6 toxicity.
Did you experience weird things during recovery for example chamging cushionfeeling under the feet, maybe new signs, or changing numbness.
Numb parts in which prickling began afte stopping?
Ataxia, and when did that dissappear?
And so on, and so on!
Lot, lots of questions....
We all are looking for hope!!
Greetings from the Heart of Dixie! My feet used to turn blue and it felt like I had stepped on an ant bed. That has gone away. My nausea has gone away as well. But I still develop new symptoms although not untolerable, just brief stinging sensations all over the body, while some areas have constant and chronic stinging sensations. Eye twitches, especially the left. When I get out of bed, my feet are numb and ache that I have difficulty walking and I have intense muscles aches as if I had a totally body workout.
The dr that diagnosed me didn't offer alot of information. I have written to several drs online that have provided me with more info about pyrodoxine poisoning and the recovery period.
Has anyone every had a dr tell them that symptoms worsen before getting better? I would like to know that-)Hang in there and continue to let us know how you are doing... :-)
It sounds like your panicking.
But you are entering the worst months.
You must believe me, the symptoms totally get so much worse before they get better.
You are not crazy! This is all legit!
And sometimes, they even seem to get better, then increase dramatically again.
It is a roller coaster, but I can tell you, I still have symptoms but I am better.
I am sorry I can't somehow take the actual discomfort away...
You are now entering a very horrible period, at least it was for me.
The shocks/zaps/stabs/numbness...EVERYTHING...moves all over the body, and changes positions... everyday, 24 hours a day, 7 days a week!
There will eventually be a moment of light, perhaps 4 days of manageable stuff...then discomfort...then perhaps 6 days of manageable stuff. I now have had almost 20 days of manageable symptoms. It is definitely not perfect, but it is better!
This is a long term recovery, BUT THE FIRST MONTHS, THE FIRST YEAR IS THE WORST!
You will survive, you will feel better, you will recover.
Hang in there!
About the face symptoms: yes, a long time ago I read in a Neuropathy textbook for doctors that there are very few neuropathies that affect the face. One was a particular toxin I'd never heard of, and the other was B6 toxicity. It was enough of an oddity (facial neuropathy) that it was a good diagnostic clue for B6 toxicity.
Someone else asked if symptoms get worse before they get better: I'd say yes, BUT if you believe the symptoms you have are from healing, and not from damage, personally I found them a lot easier to take. If a stabbing pain is viewed as a nerve trying to calibrate some newly repaired connection, that's a lot more comforting that feeling a pain and knowing it's some poor nerve dying because I dosed it with a toxic dose of B6! :-)
As for the fear, when I was B6 toxic (something like 8 years ago now), for a short while I felt in a constant state of panic, like a train was about to run me over or something. My heart was racing, even at night. That went away almost instantly (days) after stopping all B6. But as others have noted, stopping all B6 is a little tricky, because it appears in so much that we consume (drinks, power bars, cereals, even candy bars).
I am amazed, finding this thread, at how many people have so clearly been affected by this in the last few years. When I had it, virtually no one believed it existed, and there was certainly no one online to talk to about it. To everyone, hang in there, and scrutinize everything you eat or drink. Don't get depressed about the slowness of recovery - it is just very very slow. Think in terms of years, not weeks.
Interesting about the thyroid comments. I am hypothyroid, with no family history of it. I wonder if the B6 did that? Anyone else suspect B6 of affecting their thyroid?
Can any of you fellow sufferers tell me if going into menopause and hormonal changes can be the cause of this: what I mean is, I took multivitamins with B6 for years with no problem, then, the very same month I went into menopause, all of my problems started and suddenly B6 became toxic to my body.
Another question: Does anyone experience body aches and soreness all over, especially the arms and legs? Stinging sensations and a burning like parts of your body is on fire?
Finally, to those who have been through this, have you fully recovered? Can you totally recover from this and feel like your old self or is recovery sometimes incomplete.
Menopause could theoretically make it worse or expose something that was brewing because estrogen levels fluctuate a lot, and estrogen reduces circulating B6. Without it, the B6 levels will go up.
As for completeness of recovery, it's been something like 8 years for me, and I rarely think about this any more. I feel back to normal 95% of the time. That other 5% is just wierd little symptoms that are no trouble, like I'll notice some "asleep" toes, or parts thereof, in the shower for a few days. I'd say I have no residual pain or shocks or anything abnormal like that.
I read your last message Nina. You said "I am hypothyroid, B6 did that?"
I live these all symptoms of B6 toxiticy, not just B6 vitamin using, i live after using anti-thyroid drug (propycil). There is no doctor explain what is the relationship between B6 suplement and anti-thyroid drug.
But I know the B6 play role shynthesis of thyroid hormones(T3,T4). On the contrary, B6 isn't reason of the hypo-thyroidism.
Thank you for clearing that up. What were your levels when you found out and how many years did you suffer before getting diagnosed? And did your symptoms get WORSE before getting better...........alot of questions, but anything you can think of to help us better understand this horrific condition will put our minds at ease.
Is anyone of you familiar with litlle jerks in the cheek/jaw? Mostly when I am sitting or almost asleep, my underjaw (right English word???) give a jerk and my under and upper theeth are touching, TSJAK!!
I am now in the last week of the fifth month. Sometimes it looks there are small changes and there is a lot of activity in my feet during the evening and night. Cramp in the calves for almost one whole night!! Those are the moments of hope. But also often there is not much activity, and hope fades away like a damp! On this moment my feet and legs feel heavy and not very fine, as if there is no change!
Does anyone knwo those periods of activity versus inactivity and what does it mean??
My hope in those horrible moments then is based on the fact that before I stopped, there was no or very little activity, only cushionfeeling under my rightfoot, stringfeeling around the little toes and numbness.
The pain, stinging, stabbing, electricity in both feeth, needles in the face and around the mouth came after stopping.
I know, patience, believe and time, but today only is not a very good day for my mood!!!
I also know that fixation on the six months is not wise, but who can stop his thougts?? Tzenifer told me those six months were not for her, but in some way it is a point on the horizon! Maybe not wise and it may lead to dissapointment, but who can stophis thoughts.
To ninamagic: I know that my hypothyroidism definitely predates my B6 toxicity. So, the B6 toxicity didn't cause my hypothyroidism. However, maybe hypothyroidism is to blame for why my body couldn't metabolize extra B6 and just get it out of my body.
To smorris0312: My physician had me fill out paperwork to see if the Mayo Clinic would see me to diagnose my pain but the Mayo Clinic said no, that they were too busy and couldn't take all the new patients who wanted to see them.
It sounds like because B6 supplements are rather new, our condition is too new. None of the eighteen Drs I've seen about my pain knows much about it and a lot of people look at me like I'm crazy when I say that I have B6 toxicity.
I suspect that more and more people will get it now though, because so many medicines, cereals and sports drinks are fortified with B vitamins.
I try to mention B6 toxicity when I can, to make people more aware of it.
Somewhat related, the US started fortifying cereals with Folic Acid hoping to reduce colon cancer, and instead, it seems that it may have increased it! http://www.medifasthealth.org/blog/2010/02/08/excess-folic-acid-may-raise-cancer-risk/ http://www.medscape.com/viewarticle/591111
To Contessa765: Have you heard anything back from the FDA about the letter you wrote last year?
To Heimen: I have been told by doctors that vibration causes nerves to hurt more. Maybe when you're having days with more pain, you've done or eaten something which would be irritating the nerves? I stopped taking B6 supplements in April 2008 and I'm still suffering, but I can see a dim light at the end of the tunnel. Some days, with too much activity, or when I wear certain clothes and sit in one position for too long (maybe it cuts off blood) I feel like I'm right back to the worst of it all over again.
The B6 damage seems to make me more sensitive to other things. For example, I have always had eczema (genetic condition of very sensitive and dry skin) and yesterday I went swimming. In general, my skin gets dry and painful after too much chlorine or showering with strong soap. But in the parts of my body with B6 nerve damage, after a shower or a long day of swimming, I'm in extreme pain from the dryness.
This discussion is in a MedHelp thread. We can also create a Vit B Toxicity MedHelp Group. Are we interested in doing that and joining? I haven't explored the MedHelp Groups enough to know if it would be very different and help us? Maybe it would help us organize certain symptoms into categories and give us places to look for things.
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