I do feel worse - more tingling and extra sensitive - when I have a cold or the flu. I have been explaining it away as "my skin and muscles are just more sensitive, in general, when I'm sick so all symptoms are worsened."
I took 6 months for high-dose vitamin b3 1g 1.5g, then I added b6 high dose for 1 month and I began to feel itchy feet ... I've stop it, but the itching does not pass .. is tremendous, what can I do? there any doctor who understands peripheral neuropathy?
Worse, gfragile. I'm still here. It's been 7 years since my pain started and I'm not better. I've seen 22 doctors now, have no official diagnosis and no answers. And still have a lot of pain and setbacks. I hope someone else has better advice.
boots, I sent you a note and two messages but they're not showing up in my "Sent" box. I think you might have accidentally clicked the word "Block" next to my username somewhere in your browser and so my messages are not coming through to you. I don't know how you can unblock my username.
As to whether toxicity symptoms come back when you get a cold or the flu - Yes! They still do, slightly, years and years later. But at this point it's almost unnoticeable. For the first few years it was a huge difference, and worrisome. But each time it was a little less.
I occasionally come back here to see how things are going, and give an update and hopefully some hope. I had B6 toxicity something like 10 years ago now after taking 50mg per day for a year or so. I had virtually every symptom people have mentioned, though no actual pain until I stopped B6. To make a long story short, it's a VERY slow road to recovery, but it does happen. I would say that 98% of my symptoms are gone, and it's no longer a part of my life. However, I too had a very scary and depressing few years, wondering every day if my own diagnosis had perhaps been completely wrong and something else was terribly wrong. However, I did have noticeable changes within a few weeks of stopping B6 - not necessarily good changes, but definite changes. If you've stopped B6 completely, and haven't noticed anything different after a month or two (for example, new pins and needles and stabbing pains are...GOOD), then you might want to just rule out that something else could be affecting you.
My mom got B6 toxicity from a multivitamin about 2 years ago and slowly recovered over the course of ~1 year. She still had mild symptoms after recovering, but overall was probably around 95% improved. A couple of weeks ago her symptoms worsened again out of nowhere - not to the level that they were when she was first toxic, but she says they've definitely worsened significantly. She hasn't taken a B6 supplement or multivitamin since she was first diagnosed , and carefully watches her diet to avoid anything fortified with vitamins. Her diet has stayed consistent and she doesn't appear to have symptoms when eating natural forms of B6. She did start taking a B12 supplement around the time her symptoms worsened. We're thinking that it's possible that the B12 has traces of B6 in it since the company makes B6 supplements as well. Has anyone else experienced or heard of someone who nas experienced a random flare up of symptoms even after some recovering has occurred and without taking B6 again? Any feedback is appreciated!
I took vitamin B6 25mg supplement for 3 weeks and ended up having symptoms of B6 toxicity. I was tested for it and my level was 90 which was about 4 times higher than the upper range. Prior to taking the B6 supplement, I was very healthy, working out 4 to 5 days a week, working a professional job, dating, and basically living a normal productive healthy life.
About 3 months after stopping the B6, I was diagnosed with 2 (yes not 1, but 2) autoimmune neuromuscular diseases (Stiff Person Syndromre and LEMS) based on several elevated auto-antibody tests with the Mayo Clinic. My neurologist also suspects Brain Stem Encephalitis or Hashimotos Encephalopathy as part of my disease. My symptoms include coordination and balance problems, reflex problems, ataxia, speech problems, rapid muscle loss, tissue damage, extreme muscle spams, insomnia, brain stem tremors, neuropahthy, cognitive decline, brain fog, memory loss, brain shocks, derealization, panic attacks, constant shortness of breath, vision loss, and about 100 other debilitating symptoms. I can no longer work, date, and barely function at all and prior to this I was the epitome of athleticism and health.
Again, I never had a problem or one symptom like this a day in my life prior to starting the B6 and now I am disabled with several autoimmune disease and my B6 still has not come down after over 2 and half years. It is down to 54 which is better than 90, but still a toxic level. I am 100% certain that the B6 had poisoned me and kicked off some very serious autoimmune diseases. I have been gluten free and dairy free for many months with no success. i have tried some autoimmune meds and IVIG to slow the rapid progression of my disease and nothing has worked at all. I've had to stop both the IVIG and autoimmune meds due to adverse reactions and very severe side effects.
This B6 toxicity stuff is very sad and I can not believe there is not a greater concern and awareness for how damaging it can be. I do believe most manufactures are aware of the adverse effects at this point,but refuse to take their products off the shelf because of profit and greed. At the least there should be a big disclaimer on every supplement containing B6 of the possible risk of toxicity. Is that really a lot to ask for? I went from a guy who was running 30 miles a week to someone who can barely walk and breath. LITERALLY can hardly walk and breath from B6 induced toxicity and the neurological autoimmune diseases that were triggered by it.
I started taking b-100 complex under the recommendation of my migraine doctor four times a day for a total of 400mgs a day in March. Two weeks in I had the worst migraine of my life with pain in my right eye ever since. April 22nd I woke in the night with extreme vertigo and was told,I had vestibular neuritis and put on antivirals yet the vertigo is much worse a month in. I also started getting red patches on my face, worse migraines, leg and hand swelling, body aches and the dizziness has not stopped, also problems with my memory. I have said to drs all along that I felt awful after taking the vitamin b complex, but not one has suggested toxicity. My husband started researching if it a possibility and we were led here. I was always told don't worry it's water soluble so you will have no side effects. I think it is to coincidental that all this happened after starting 400mgs a day. I have been sleeping in a recliner for a month because I can't put my head forward or back without the vertigo symptoms. Do I have any hope of this going away if this is the problem? Any advice would be appreciated. Thanks in advance.
Um yes. Stop the B100 immediately. That's way too much even at one pill per day, but 4? Yikes! If you feel at least a little better after 2 weeks, then you've got your culprit. There are a lot of meds for migraines, but I've never personally heard of overdosing on B6 as a treatment for that. I'd find another migraine doctor too, personally.
If one takes B6 and then all hell breaks loose in the body and the problems don't go away when one stops the B6 need to investigate if there is a bacterial issue, chronic bacterial infection. Example doing a GI stool testing DNA and culture to see if there is an imbalance in the gut flora, is there a high level of strep, is there helicobater pylori, parasites. H.Pylori and parasites can be very difficult to detect, one can do testing, if they don't show it does not automatically mean one does not have them. Sometimes it can time time and numerous tests before things show. H.Pylori and parasites feed on ones nutrients and give one deficiencies, body can't properly use nutrients. Taking supplements can also feed the H.Pylori, bacteria, parasites...
P5P is the activated form of B6 - B6/p5p same thing.
This is from an article by Dr Yasko: "Chronic bacterial infection and its effects on tryptophan breakdown are part of the reason why I suggest only low levels of P5P for individuals with chronic bacterial issues and CBS up regulations. P5P also helps to push the CBS reaction as well as to aid in the conversion of kynurenic to quinolinic The kynurenic that is generated via the breakdown of tryptophan by bacterial infection is calming; however P5P helps to convert it to quinolinic which is excitatory. ........While kynurenic acid is calming for neurotransmitters, the product that kynurenines are converted to by B6 is quinolinic acid. Quinolinic acid is an excitotoxin. So if you have high kynurenine and add B6 you can generate quinolinic acid which acts as an excitotoxin and can aggravate the nervous system."
If one has Helicobater Pylori it is a bacteria and is classified as a class 1 carcinogen.
"Vitamin B6 Is Required for Full Motility and Virulence in Helicobacter pylori"
A bit of info on H.Pylori:
another snippet of info from Dr Yasko, "Migraines can be caused by hormone and/or serotonin imbalances and recall that serotonin imbalances can be related to chronic bacterial issues. So this gets us back to a need for a full CPR if other suggestions are not enough of a help. Also lack of carnitine (often secondary to H.pylori) can be sufficient to cause migraines."
Strep (streptococcus) and H.Pylori produce hydrogen sulphide and this will create a high level of sulfite/sulfate in the body and this is toxic. H.Pylori also depletes one of nutrients and causes malabsorption. there are also other nasties that produce hydrogen sulphide and if you then add to this food that is high in thiols (garlic, cabbage, cauliflower etc) make the level of sulfite/sulfate even higher.
There are very few doctors/practitioners who have sufficient knowledge to help one with these types of problems, genetics also comes into it, ones genetics will determine ones susceptability to parasites, H.Pylori, and will determine the severity.
When one does blood testing, like B6, B12, magnesium, folate these nutrients might show as high in the blood but it does not automatically mean the nutrients are able to get into the cells.
There are good tests like Metametrix Organic acid test and Amino Acid test and this gives good info, but need to work with a practitioner who understand these things. I have done Metametrix GI stool test (DNA) and I did a GI stool test that is culture. I have also done Doctors Data hair test which I do every x number of months.
in 2009 I took some B6, it was horrific, I was B6 starved and taking it was like pouring petrol on a fire. It took me 3 years to find out about CBS and quinolinic acid and about 3 1/2 years to find out about H.Pylori... I do a B12 blood test and it shows as high, but I am B12 deficient there is a problem getting it into the cells... I have never done a B6 blood test, use vitamin B markers on functional testing.
To know B6 or other vitamin B nutrients, Organix comprehensive profile urine test (OATs) has vitamin B markers.
i took Emergencee supplement (1-2 packets) almost daily for about 2 years and about 4 months ago started experiencing cold hands and feet, tingling and needles all over body, burning skin,insomnia and anxiety.
I went for brain mri and neuro workup 2x, all clear for ms.
Turns out my b6 level was about 110, doctor said toxic level.
Be careful what you take! I stopped taking the supplement and my paresthesias are about 75% less, but skin redness and burning continue. Its gonna be a slow recovery :(
First off, I am 26 and I was diagnosed with ALS at 25 years old. But! I don't believe that I have ALS and I'll tell you why.
I've been doing a lot of research lately (after all, my life is at stake). I found that it is unheard of to have an ALS patient with extremely elevated B6 and/or B12 levels. I also found that B6 becomes toxic in large quantities. People with elevated levels develop sensory and/or motor neuropathy. Usually people have sensory problems and not motor problems, but they also have a normal B12 level. (I have very minimal tingling in fingers one in awhile. My symptoms are mainly motor problems) So, I believe my high B12 levels are negating the sensory neuropathy caused from the toxic B6 level. That would just leave me with motor problems that look like ALS. Real ALS mainly strikes 40 -70 year old people. Recently, younger people in their 20s are getting an ALS diagnosis. What else happened recently? I believe energy drinks were invented. So, my theory is: People with an unusual form of "ALS" at a young age actually are just suffering from Hypervitaminosis B or Pyridoxine Toxicity. B6 is a neurotoxin, but the body requires a small amount for some reason.
My B6 level: 358, Normal range: 20 - 125
My B12 level: >1500 (off the charts all 3 times), Normal range: 180 - 914
Recent B6 Test: 230, Still toxic but dropping. And, progression of my condition has slowed.
I found in several forums people with elevated B levels complained about dehydration and stress before symptoms occurred. I also complained of those things. So I do believe that stress holds onto B vitamins and since they are water soluble, the dehydration causes them to store. Hmmm... What causes dehydration, stress, an increase of B6 and B12, and is fairly new? Energy drinks!
I'd really like to chat with more people about this. Has anyone else had similar stories?
If a person has very high B12 blood level, it probably means there is a problem getting the B12 into the cells. The same applies to very high levels of folate in a blood test. Folate collects and the level gets higher and then there is a chance it can break down into glutamate. Need to have sufficient lithium in the body to help transport B12 and folate.
There is testing that can be done to check these things. Blood lithium test is good to see if there is a lithium deficiency. If one is lithium deficient then there will be problem with B12 and folate.
Certain blood tests are not very helpful. Ordinary blood test for B12 is not useful in that if the level is high it can mean deficiency due to there being a problem of getting it into the cells, same applies to ordinary folate blood test.
Organic Acid test - Metametrix (I have used this for myself), there are other companies, the test has vitamin B markers and is an excellent test whereas the regular blood tests can be misleading.
To know where one stands in regard to B12, a hair test (I use Doctors Data hair test for myself) shows cobalt which is a B12 marker and also shows lithium and other minerals and shows if any heavy metals are coming out and which ones. Need to be careful with reading lithium on a hair test, a high level could be dumping which means deficiency.
On an Organic Acid test the markers for B12 is methylmalonate and for folate is formiminoglutamate.
My blood B12 level is high and I don't have sufficient B12 in the body. My blood folate level is very high and I don't have sufficient folate in the body. My blood lithium test shows deficiency. Hair test shows cobalt as deficient and lithium as dumping.
Organic Acid test, B6 look at the level of Xanthurenate.
If something shows as high in a regular blood test it does not automatically mean it is getting into the cells, in some cases it means deficiency.
There are numerous reasons as to why there would be lithium, B12, folate, deficiencies, gut issues, malabsorption (chronic bacterial infections, strep, H.Pylori etc) and ones genetics, often it can be a combination of these. Nutrients do not work in isolation, if one has those deficiencies there will be other deficiencies. Need to address the causes.
Need appropriate tests, work with someone who understands these things and can interpret the tests. Difficult to find people who have sufficient knowledge of these things.
If one has bacterial infections (strep, prevotella, clostridia, H.Pylori etc) and one takes vitamin B6 or p5p this can make things a lot worse, if there is a genetic SNP CBS and bacterial infection and add in B6/p5p can make a bad situation worse.
I am 7 years past my initial B6 toxicity and am now back to my strong, healthy self. BUT, it was a slow process and for me it got worse before it got better. I think it took a good 2 to 3 years to fully recover from the weakness, pain, burning, anxiety, insomnia, tingling symptoms.
One thing I discovered is that you can get a very inexpensive genetic test to find out if you have mutations in your DNA that cause methylation problems: http://geneticgenie.org/methylation-analysis-example/
It cost 100 bucks to get the DNA testing done.
I have read almost all the posts here and im quite amazed by how similar most of the symptoms are with the symptoms that I have. The major health problems I have started little more then half a year ago but soms of the problems i have going back to when i was 18, now im 32.
- Fast heart rate with skipping heart beats. I can feel my hearthbeat when sitting or laying in bed.
- It does not matter how I sit, after awhile I get this feeling in my legs that they are "sleeping". Scary thing is that I can put a needle in my leg all the way to the bone without feeling any pain. Same for the arm. I have only done this once don't worry. :)
- Pressure inside my head and a high pitch sound in my left ear.
- Brain fog. The feeling u are in some sort of dream. Here in Holland they call it De-reality feeling. Its Dificuly to focus, for example reading on the phone or computer.
- More difficult to breath and irritated and dry throat and nasal passage.
- Dry painful eyes and me too have those floating black spots, especially when looking at a white wall or sky.
I started to find out about the B6 when I was at the lung specialist about the breathing problems. After I had the blood test done and called for the results they said if I take B6 supplements and yes I did. I stopped all the supplements from that point.
Few weeks later I called back and asked if they could send me the lab results. It turns out my B6 level was at 500nmol/l. That's 83 ng/ml. This was almost 3 months ago.
I am planning on going back to the doctor and ask if I can have it tested again to see of the level has dropped.
I have the feeling I am getting better with every day that passes but some days are horrible. I just want to go to bed and hope its gone when i wake up. Problem is that when u wake up you feel even more horrible.
hi everyone! It really helps when you all put in what has helped you! I feel I am getting better but some days I fell helpless again. I have avoided foods high in b6 and I feel that helps temporarily! However, I don't think that gets to the root of the problem which is being able to metabolize b6! I have read that magnesium and zinc are important for this to happen. Also when I have a glass of wine I notice I have less tingling and night leg cramps. So I have started to take enzymes by neo-life again with each meal. I think this might help to metabolize any b6 floating around in my system. I hope this is helpful, it would be wonderful to find out what really is the key! Best to everyone! from missmilllie
I was diagnosed with MTHFR over a year ago. I've seen two MTHFR specialists since and have been on over-the-counter medications and vitamins to help my body methylate as it should. My constant tingling pain has not decreased much. I still have the pain that I have always attributed B6 toxicity. It's been over 6 years of constant pain for me with no diagnosis. I just know that if I avoid foods and supplements with B6, I'm not in as much pain. I've also discovered that preservatives like sodium benzoate and food colors like Red 40 and Yellow 5 cause me a lot of additional tingling and pain.
I'm new here and have been reading the posts (which are great by the way)
Burning feet on and off
Sometimes burning fingers
Tingling all over the body at times
Sharp stabbing pains in feet and hands sometimes
Today I had burning for a short while around my knees for the first time
Blood tests all normal - ANA, etc. Except for B6 - range 13-27, came back at 50
Have had Nerve conduction study - Large fibres normal.
Was taking multi-vitamins last year and on and off this year. Looking back I loaded up on natural B6 and didn't need the supplements - copious amounts of salmon, spinach, bananas, brown rice and chick peas etc that I understand are high in B6.
Haven't had an MRI yet...
Does this sound like B6 toxicity or is the value too low?
New to this thread also, I was diagnosed quickly I only took 1 b-100 pill then switched to b-50 for 7 days during those 7 days I experienced intense itch and crawling in my legs with cramping in my leg muscles. My Dr sent me to an neurologist, MRI was clear so she tested my b6 I am 98.9 (range 20-120) so normal range but high end. I have been off the vitamins 2 weeks and today I feel like me again, I still have tingly and some residual itch in my knee area, but the cramping has stopped for the most part and I feel better. I have had ups and downs emotionally and very nervous. I hope this will soon leave too. So I was on it a very short time but still had a reaction...Also my liver enzymes increased during that week, they are now back to normal range...B6 is toxic,...I am not completely better but feel like I will get there. So sorry for all the sad stories on here and the lack of acknowledgment in the medical community.
I am sorry you may be experiencing symptoms from B6 toxicity. Everyone is different but I can tell you that a B6 level of 50 can absolutely cause nerve damage as BOTH of my kids had erratic nerve symptoms in that range. We discovered their levels early because I was already very sick at a level of 87. My level dropped to 25 only five days after stopping the supplement and restricting my B6 intake from food. I had conflicting opinions from my two doctors as to which caused my problem--one thought it was from my B6-rich diet; one thought it was from my supplement. It was from the supplement.
For 2-1/2 years now I have been healing--slowly. Symptoms from my nerve damage were (and still are to some extent) CRAZY: lightening bolts in the body, buzzing and quivering, twitching, tinnitus, burning sensations, numbness, diffuse pain, pins and needles, overall discomfort, feeling flu-ish all day, every day, and the list goes on.
My toxic levels came from a 50+ multi-vitamin--NOT a mega-dose. Beware of ADDED B6 in foods and supplements. From my research, B6 that occurs naturally in foods is not a problem for most people.
Knowledge--even in the medical community--about B6 toxicity appears to be lacking. It seems patients are often misdiagnosed and are subsequently scheduled for many unnecessary, sometimes painful and costly tests done before testing for B6 levels. From the onset of nerve symptoms, B12-level testing seems to be the norm. If B6 testing were done along with the first blood tests, perhaps more patients would catch the diagnosis sooner and avoid additional debilitating effects of the nerve damage caused by B6 toxicity. In my case my B12 levels were tested at the onset of symptoms. Had they also tested for B6 I could have avoided a trip to the neurologist, two MRIs, and a very painful EMG test.
Healing is slow but it will come!! From my experience, I would recommend stopping any supplement with B6 and be sure to read the labels on any food products. I have found ADDED B6 (pyridoxine hydrochloride) in many different foods: margarine, cereal, frozen foods, and many, many more. Beware!
Although I never posted, this forum gave me hope that someday I would feel better; someday I would regain my life. Thank you to those who took the time to write because it gave me, and others like me, hope. It was time to pay it forward.
Hi Go Vegetarian,
I was wondering how long you took B6? I only took it for 10 days at most and only one high B 100 pill, the other 7 days were B50.. but that is when this all started with my legs.. My muscles cramp, the tingly feeling is lessening but I am concerned about the muscle pain. Did you have cramping?, it seems to be more in my left leg than my right, and my siactic nerve seems irritated, along with being nervous in general I thought it was going away the last two days and today again my muscles hurt...I cant' imagine if I had taken it longer...any advice would be greatly appreciated...is this going to go away? its been 2 weeks off all supplements (except iron, since I have low saturation my dr prescribed iron for a while)
I took my multi-vitamin for approximately six - eight months. It had only 150% of the RDA, or 2mg. I was misdiagnosed for four months and continued to worsen during that time. Of course, I was still taking the poison (supplement) that was making me so sick.
Remember that the supplement industry is not regulated so we cannot be absolutely certain what we are ingesting. I no longer trust ANY over-the-counter supplement. If I have a deficiency I seek a doctor's prescription and pick it up at the pharmacy.
Another reminder that supplemental B6 is also found in foods so read labels! And watch for it in those energy drinks as well. One of my kids became toxic having one energy drink per day with no other supplement of any kind.
I did not have muscle cramping but had (still have) a lot of muscle fasciculations (involuntary muscle twitching). My legs were affected the most and continue to have some of the same, but milder, symptoms.
I honestly don't know if cramping is connected to nerves, but I do know from personal experience that nerve damage caused by B6 toxicity can create all kinds of crazy symptoms. If you are taking any other medications, please also look into those as muscle cramping has been connected to other drugs. Cholesterol medication comes to mind...
I wish you the best in healing and am here for your support if you need it.
Thank you so much for your response, scared to death is my current state of mind! and I can use all the support I can get. I am currently off all supplements, my dr prescribed me an anti-inflammatory and a muscle relaxer which at this point I have not taken, I am scared to take anything. I found out that tonic water has quinine in it( an old muscle spasm med) so I am drinking small amounts to see if it helps. one day at a time I suppose, I am mad at myself for taking it, even for only a short time...but with my levels in "normal" range I still have symptoms. I am reading labels and trying to reduce the foods with high levels...it doesn't leave much to eat and I have already lost 30 pounds due to stress, testing for everything in the world and now dealing with this....thank you again, sending lots of light and love your way. oh, I have recently started a weekly massage to see if that will help eliminate the toxic b6 and help with the pain..I am trying all holistic ways at this point.....I would love to stay in touch, thanks again! :)
I can relate to being scared about the symptoms of B6 toxicity. I didn't even have the courage to read this forum. My daughter found it for me and she would read me the posts. Since healing is excruciatingly slow, I was afraid of not getting better; afraid of everything, including eating. I, too, lost a lot of weight. I got down to a dangerously low weight.
I mentioned that my primary care doctor suspected my high levels were from my B6-rich diet and my neurologist suspected it was from the supplement. I stopped both. It took a very long time and monthly B6 testing to convince me that my diet didn't raise my levels. B6 in its natural form is water soluble. I'm no expert, but I'd venture a guess that the supplements are synthetic and those of us on this forum cannot break it down. I did--and still do--check labels for B6 (pyridoxine hydrochloride) that has been added to foods. I had to change my habits since I found it in so many of the products I bought: the margarine I was loyal to; vegetarian convenience foods I enjoyed; high-protein and high-calorie smoothies; I even found it in frozen waffles.
As I posted before, my level was 87. My level dropped quickly, but the devastating effects of this toxin lingers. Except for a few forced walks outside, I stayed in the house for nearly one year. I feel like a new human being now, even though I still have symptoms. My sciatic nerves (both legs) were damaged the most. It started in my legs and will end there too!
You were on it for such a short time--I would think you would heal faster than I did, but I suspect any damage B6 may have caused to your nerves may take a considerable amount of time to repair themselves. It is just such a slow and agonizing process. Nothing I did helped speed my recovery. I began eating a better diet, because low B6 foods are not the healthiest. I did acupuncture but was too uncomfortable to continue. Laying down, sitting down, all of that was uncomfortable. I was only comfortable in a Jacuzzi (I couldn't feel the symptoms) and when I was asleep. Walking helped deal with it, although very little.
What was your level? What does your doctor say?
I was prescribed a muscle relaxer as well. I found that Xanax actually helped with my symptoms. It's not something I would really recommend anymore since the latest research on it, but it did help.
I am really sorry you have to go through this. I wanted to shout from the roof tops to tell people to watch out for this neurotoxin since it can be so destructive to our bodies. I was so miserable for so long, and it was totally preventable.
Write anytime. I'll keep checking. I'm here for you...
My level a week after stopping the B50 was 98.9 (20-125 normal per ARUP) so not abnormal but on the higher end .My legs also are what was affected. After my 1st dose of B100 I felt the itch in my left leg, I stopped it but then started again with just B50 about 4 days later,I was told all B's were water soluble and it would help with my burning mouth, a week on it I had the pain, cramping and crawling in both legs..Finally stopped all vitamins on Aug 21st. after my liver recieved was climbing. Dr. said it was from all my supplements. ( centrum, b-50, fish oil, calcium and D3) with the centrum and a probiotic I think I was taking around 65 mg a day. I do feel like you, I am afraid to eat, I read everything on the label, last night I felt pretty good then we went to eat and I had a bad night with my left leg this is the only residual scary symptom, I feel like there are bugs crawling under my upper leg thigh. This morning it was worse again. The muscle aches and cramping still come and go but not constant. At one time my legs felt like I had ran 30 miles and hip joints ached....I am very anxious about my level, but I am anxious in general. Dr prescribed me Klonipon for anxiety, a muscle relaxer, and anti inflammatory on Thursday which I am not a big propionate of prescription drugs but I do take .025 of klonipin (klonopin) when I feel like I can't cope. I am going to ask for another test in a week or so I am much like you, I need to see it is going down. The stories on this forum are frightening and in some ways I think can feed each others fears. I did take it only about 10-14 days but it was enough to cause my leg problems and over sensitive nervous system. I wrote the author of the book that suggested to take the B-100 for burning mouth geographic tongue, he needs to inform his readers B6 is toxic!! he replied and said he would, but I haven't received an email from his site yet. I can relate to you, I too just stay in the house when I am not at work( work is hell for me) I constantly worry and feel nervous. I guess I should be grateful I was not at a abnormal level and I stopped fairly soon...I just want my life back, no pain, no "bugs" and be able to eat and not stress about what is in it. Your story gives me hope, I am so grateful to have someone to talk too, most people including some family just dont think its from a Vitamin...I know it is.
I am going to try a muscle relaxer today for the first time....hoping I recieved take things that do more harm. I will stay in touch and again THANK YOU!!! :)
You are very welcome. I'm happy to help in any way I can. I can relate to so much of your life as a B6-toxicity victim. We are victims of this neurotoxin, aren't we?
Some members of my family also didn't believe me. It's absolutely cruel in my opinion. How is it that you can have a toxic level, have symptoms of nerve damage, the research--albeit little--is out there. There is still the misconception that one must take a mega-dose for years to cause damage. Not so. We, and this forum, should be proof enough of that.
Since my diagnosis in early 2011, my doctor's office diagnosed more than seven patients with B6 toxicity within a year. My guess is that this will continue to worsen with all the hype about B vitamins. It must also be due to the synthetic B6 that is currently in these supplements. I never had a problem with vitamins before this, so it isn't just because I can't break down B6--it must be a different chemical composition.
Because I was misdiagnosed, I sat in misery until one day I decided to get a massage. I was willing to try anything. The massage was awful, and the therapist triggered even more symptoms but this time in my face. I had endless twitching, to the point that my lip was actually moving up and down. This finally got my doctor to realize it was NOT a pinched nerve. That part was quite frustrating. I'm glad you were diagnosed early, because I do believe you will have a speedier recovery. The fact that you sometimes don't have any is a good sign. My symptoms never let up until I healed quite a bit. I would have periods of no symptoms, but it took a very long time to get there. Seems you may already be at that point.
I accepted a friend request but am not sure how that works!
I went for a 2 week check on my level..its been two weeks since I was 98.9..my doctor see my anxiety so he ordered me a test today...now I wait for 4 days to see if my level has dropped at all...I am like you, I need to see it is, not just feel it. I am also telling everyone I know about this...I am sure my Dr. will start checking this now also, so many people do not know what is wrong and their needs to be more awareness. I thought I was helping my body, in fact I was disabling it...I just hope and pray it will stop completely one day...today I have pins thoughout my body, I get them even in my tongue...those ones I pray to go away fast....I do feel better all in all, but again, I have my days of completel exhaustion and almost panic attacks...I am not sure how the friend thing works either, just though it may work in case we sent a private message rather than on the thread...either way I am good with, we are all in this together. unfortunately ...I will let you know my level when I get it back
You may turn out to be one of the lucky ones! If you are feeling some better already, you will recover much faster than a lot of us. As I said before, I didn't even feel a smidgen better for seven or eight months. I was off work for over a year.
The doctor I went to used conventional units to measure my B6 level. Normal range for them was 2.1 to 21.5-ish. I was 87 but it dropped very quickly. I had a test only five days after being diagnosed. I was relieved that I did not have so much of the toxin in my blood. It takes longer to get out of the tissues from my understanding. I still feared B6 in food, but turns out that was a bit irrational.
I accepted the friend request from you but nothing happened. Then I received a 'friend' email from medhelp from someone else! Maybe we can figure it out and go that route.
Symptoms are crazy and random. I didn't have the pins in the tongue, but my tongue did quiver. Horrible feeling either way. We are all similar and we are all different at the same time.
Your anxiety and fear is understandable. I was glad to have a diagnosis, and the hope to heal, but I was fearful and anxious too. Who knows how long it will take to feel better? how long it will take to heal? Life interrupted. That's an understatement!
I copied and pasted this into the 'friend' forum (I think) so look for it there as well. Just in case, I am also posting here.
I put a note on your profile...today is one of those bad days...did your muscles and joints ache? like a deep ache..its like a flu ache today :/ I have good days and then bam, back I go...is discourging honestly.
I posted on your profile but am unsure it went through. Please let me know!
I felt like I had the flu. All day, every day for a very long time. I don't get achy with the flu, and I don't know if that's related at all, but I didn't get the aches you described. I was very weak, fatigued, all over malaise.
I got it, thank you...I replied this morning on you profile.... my levels are way down 35.4 from 98.9 (20-125 normal) ...hair still thinning and still have muscle aches...but feel like some other symptoms may be fading (I hope)
I have been following this discussion for about 1 year after experiencing similar symptoms to many of you and discovering that my B6 levels were (slightly) higher than normal (140 nm/L; ref range 35-110 nm/L). It took about 3 months for my levels to decrease to 90 nm/L...interesting for a "water soluble" vitamin I think (?) Anyways, I was pretty convinced my symptoms were from the B6 "toxicity" at the time (especially after reading this forum), but they didn't seem to match what was published in the medical literature regarding vitamin B6 overload; for instance, my first noticeable symptom was body-wide muscle twitching (fasciculations) and second symptom was "pins and needles" (paresthesias) on my hands and feet. These symptoms don't correlate well with the severe sensory peripheral neuropathy cited as side effect of ingesting large doses of vitamin B6 in the medical literature. In other words, I just wasn't convinced it was B6.
Recently I revisited my list of symptoms that seem to re-occurr without provocation and include muscle twitching, "pins and needles" in feet/legs/hands, muscle cramping, burning, stabbing pains, muscle pains, tendon pains, brain fog, terrible anxiety and extraordinary fatigue and found that they are almost identical to adverse reactions experienced from fluoroquinolone antibiotics (these include Cipro, Levaquin, Avelox and other generics ending in -floxin).
I developed the neuropathic-like symptoms that I attributed to B6 toxicity shortly after finishing a course of Cipro (adverse events from this drug can apparently occur up to 6 months (!!) after taking a fluoroquinolone).
At this point, I'm questioning what is really causing my symptoms; a B6 toxicity or an adverse reaction from Cipro and I'd like to ask those on this forum if they might also be able to make a similar connection between these symptoms we are experiencing and recent use of a fluoroquinolone antibiotic.
If one has G6PD (glucose-6-phosphate dehydrogenase deficiency) there are certain drugs one should not take and fluoroquinolones is one of them.
One can have the genetics where one has G6PD - but one can also not have the genetics but have G6PD - if ones sulfate level gets too high it can impair the enzyme function - what would cause the sulfate level to get too high, e.g., if one has a bacterial infection that produces hydrogen sulphide (strep, helicobacter pylori)
Recently I noticed that the singular have I have been taking for more that 10 years causes tingling of the feet too! It is a side effect only the doctors knew about but now was sent with my last prescription! So I am off singular to see if I get better. I didn't think that there could be two contributing factors for this condition of tingling feet! About those drugs you were taking, my husband was on Levaquin a few years ago and had a stroke because it can cause Vasculitis and so can Singular, plus Peripheral Neuropathy! My feet are starting to hurt now and my legs ache and when I first get out of bed it is hard to walk on them. I hope this is a sign that my feet are waking up. So don't rule out that two things could be happening at once! Also I have tremor in my hands that I thought was caused from all the asthma meds I have taken like Albuterol inhalers. I had a man tell me the other day" listen to your body it never lies", so I am trying to listen and get well!
Don't know if this has been addressed but the symptoms of magnesium
deficiency are VERY similar to B6 toxicity.
Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur [1,2].
If magnesium is severely deficient, the brain is particularly affected. Clouded thinking, confusion, disorientation, marked depression and even the terrifying hallucinations of delirium tremens are largely brought on by a lack of this nutrient and remedied when magnesium is given.
Magnesium deficiency may be a common factor associated with insulin resistance. Symptoms of MS that are also symptoms of magnesium deficiency include muscle spasms, weakness, twitching, muscle atrophy, an inability to control the bladder, nystagmus (rapid eye movements), hearing loss, and osteoporosis.
It used to be known that some
minerals (expecially magnesium) are needed to properly utilize some vitamins.
In the past, low magnesium has caused me a bad reaction to Cipro, high
levels of D3 and now B6.
Yes, taking magnesium now (after the toxicity) can help but it is most important to have a good base BEFORE supplementing with vitamins
and especially high doses.
Thank you for your reply. The G6PD (glucose-6-phosphate dehydrogenase deficiency) you mentioned, is this somehow connected to a methylation defect? I have read that genetic defects in the methyltetrahydrofolate reductase (MTHFR) pathway may indicate a persons inability to expel toxins from his or her body (and also inhibit the conversion of B vitamins from food and supplements into active forms the body can use...maybe contributing to accumulation and toxicity?). Maybe there is some connection suggesting an issue that stems from this defect?
I know that there has been much discussion on this forum and others about MTHFR, and it could perhaps be a common denominator that is contributing to toxicities from a range of sources (including possibly B6 and fluoroquinolone antibiotics).
The question is, if we identify we have a genetic defect contributing to all these issues (and we can't very well change our genes), what is to be done?
The methylation pathway - Dr Amy Yasko has a facebook page and a website - and she has various books/pdfs with excellent information. Her focus is on the most critical SNPs in the methylation pathway. She also has a methylation SNP test. If you want to learn/know more you could read her books and she also have videos free online to watch where she explains what methylation is and the various SNPs and lots of other info.
G6PD enzyme can be impaired by high sulfate level, one does not necessarily have to have the genetic defect.
In regard to sulfite/sulfate - CBS and SUOX are involved this requires various nutrients e.g., molybdenum boron magnesium, B6/p5p.... any deficiencies will impair enzyme functions. But it gets more complicated - heavy metals will interfere with the body using nutrients (vitamins/minerals) - then there is bacterial infections, yeast, gut flora imbalances, parasites...
If one has bacterial infections, things like strep, H.Pylori they produce hydrogen sulfite and this will cause a high level of sulfate and will deplete various nutrients
Certain SNPs will predispose one to being more susceptable to bacterial and parasitic infections, certain SNPS make one more susceptable to more severe infections -- e.g. SHMT, BHMT, ACAT, CBS..
Methylation needs to work properly to silence virus, needs to work properly for correct gene expression and a lot of other things as well..
One can have various SNPs and this does not automatically mean it is expressed - functional testing will give good info, but then one needs a practitioner who has an understanding of methylation/methylation pathway, how to interpret amino acid test, organic acid test, hair test, blood tests...
In regard to SNPs in the methylation pathway this is where Dr Yasko focuses her attention, it is about getting methylation to work properly using nutrients to bypass genetics...
The deeper one looks into this the more complicated it gets. It is about genetics, methylation pathway, gut issues, bacterial infections (strep, helicobacter pylori) anaerobes/aerobes levels of E.Coli, lacto and bifo these various things needs to be in the correct range, too high or too low is no good. Parasites, heavy metals.
MTHFR does not work in isolation need to look at the bigger picture.
A person can be B6 deficient, and they take B6 or P5P and it causes problems - if one has chronic bacterial infections need to be careful the dosage of taking B6/P5P.
If you want to know more view Dr Amy Yaskos videos and her book/pdf which is free on the internet to down load called "Autism: Pathways to recovery" don't let the word autism put you off because the info in the book is relevant/applicable to anyone/everyone it is about methylation/methylation pathway, SNPs and addressing the issues.. she also mentions G6pd
Wrong sensations in the feet and finger tips, and tons of other symptoms - for me it is nutrient deficiencies, heavy metals, chronic bacterial infections, strep, gut flora imbalances and parasites and genetics... I have been on the nightmare road for a long time, taken me a long time to find info, get answers.
Blood tests, some are useful, some are not. What shows as high in the blood does not necessarily mean it will be high in the cells. Some nutrients can show as high in the blood but the cells are deficient.
Organic acid test has markers for B1,B2,B3,B5,B6,biotin,B12, folate, neurotranmitter metabolism markers and other info - me personally I would never use a blood test to see B6. I would use an organic acid test.
Methylation needs to work properly so the body can get rid of heavy metals. In her book she explains what methylation is, why it is important and what it does..
wtrboy, this is interesting, because I had a bad reaction to Cipro in July. It was pretty rough and I could barely walk for a while, pretty similiar symptoms to you. So yes, Cipro can do all of this.
As part of my recovery, I took a regimen of supplements, was low on quite a few things, D being the worst. I was getting better steadily, walking, swimming, etc. - but then wondered why recently my recovery stalled, and I was getting additional dizziness, random muscle twinges and tightness in my back, and increased tiredness/soreness in my arms and neck.
Well, it turns out one of the magnesium supplements (malate) I started recently has too much B6 added - my recent blood tests show a high level of B6, but just outside the range, when everything else is normal. I feel fortunate to have caught this before it got out of control. I stopped anything with B6, even my multivitamin, a few days ago. The twinges have improved a bit, still a little dizziness, will have to be careful for a while to avoid additional B6, and go back to magnesium glycinate without the B6 added.
I have had a b6 toxiciy and mine is 90 as well, however they didnt find it for three months as they thought i had a auto immune disease. I also went on a gluten free, dairy free and sugar free diet, which helped with the edema I had, my vision was going, and could not make a fist, ankles and knees swollen and pain full ect. I think my b6 level were more then likey in the high 200-300 hundreds and because I went on this diet it brought it down to 90 just my theory. I lost 16 kilos in weight and could hardly move. I have never taken b6 and think its was either in fortified foods or a lack of othe b vitamins in my diet that made me store b6. I found out later that my b12 was bery low and i fixed that, which in return halved my iron count which brought it back to normal. I have had three months of work, and Im going back in two weeks. I can make a fist after about a hour after I wake, my vision has gone back to normal, my edema has gone but does come back if i go off my diet and if I go on long walks which makes my hands worse. I dont eat anything with b6 in it if I can help it. you only use 1-2mg per day so if you eat b6 foods you dont use the store of b6, and your levels wont go down. When I found out I had a b6 toxicity my docoto didnt even know what it ment, he gave me a copy of my blood tests and said I cant find anything wrong with you, it wasnt till I got home and read through them that I found that my b6 was toxic. Its been a hard long road, but there is always hope. Go organic and unless they actually find out you have something else and it shows up in a blood test I wouldnt believe the doctors, b6 toxiticy is very rare and the symptoms are different from person to person, Im shocked how many things I have wrong with me and i to was a very fit person prior to this I never got ill, Im just hoping for the day when I wake that my hands are normal and all the pins and needles are go. Hope your recover soon.
I have read most of your posts in this forum and I am wondering if I may have missed what I am about to state here, which is, that B6 toxicity probably varies amongst individuals according to the detoxification status of each individual's body (i.e. the body's cells). Theoretically, it may well be possible to take "very high" doses (i.e. 100-200mg) of B6 over a long period without toxic effects. I suspect that most of the scientific testing may have been done on "healthy" individuals who may well have been able to tolerate the high doses. The rest of us "unhealthy" humanity will likely suffer adverse effects of varying intensity and timing (relative to our respective start dates of supplementation). Unfortunately, mainstream medicine appears not to have any input into the issue of the varying detoxification status amongst people. "One size fits all" is probably not a valid assumption for safe B6 supplementation, regardless of the scientific testing.
The reason I state this is that my understanding of B6 is that it is involved in a key component of the detoxification pathway in the body's cells, the production of Cysteine, the precursor to Glutathione, itself the "master" antioxidant in the body. Production of Glutathione is the first phase of the 3-phase detoxification pathway in the body's cells, and B6 is implicated in this via its role in the conversion of homocysteine into cysteine.
High intakes of B6 could therefore lead to high levels of Glutathione. This however is not always a good thing. This is because, if phase 1 of the detoxification pathway is upregulated with no corresponding upregulation of phases 2 and 3, then the result could well be adverse even after relatively short periods of high-dose B6 supplementation. The degree of adversity will depend on the relative effectiveness of the later phases in the pathway.
Therefore, if my understanding is correct, then one should not embark upon a supplementation regime without addressing phases 2 and 3 of the pathway.
I researched the foregoing because of my own health and wellness issues. My sources are (in the main), "Methionine and Methylation: Chicken or the Egg" (which can be downloaded from the web; authors: Nancy Mullen and Amy Yasko) and (most importantly) a 3-hour video of Dr Christopher Shade's 2012 lecture delivered at the International Academy of Biological Dentistry and Medicine. This lecture, which to me was a massive eye-opener, may be viewed at http://articles.mercola.com/sites/articles/archive/2013/01/13/mercury-detoxification-protocol.aspx .
In concluding, I would hasten to add that the foregoing is based entirely upon my understanding of the underlying issues related to activation of the detoxification pathway, and the risks that may be attendant upon this activation. It is in no way "gospel". My point is that at least some of the varied symptoms (and their timing relative to start of supplementation) attributed to B6 toxicity may well be the result of upregulating phase 1 of the pathway to the exclusion of the other phases. I believe this needs to be considered if one wishes to take up B6 supplementation for any length of time.
Currently, I am having early symptoms of B6 toxicity (intermittent, sharp stabbing pain in feet) and symptoms of imbalance in the detoxification pathway (itchiness on arms, neck and upper chest, followed by "burning" sensation and flushing). I suspect the latter is caused by the released cellular toxins not being able to exit via the usual excretory channels due to the "downregulated" phase 3 relative to the "upregulated" phase 1. I had been on supplementation for about 50days when the symptoms started to manifest. I have now discontinued the B6 (33mg Pyridoxine daily).
I've been recovering from what I think is B6 toxicity for almost 8 months now. The manifestation of my symptoms though is a little different than what other people seem to have. I'm looking for clarification on what might be going on with me....
My main problem is sleeping. While I'm awake I have almost no symptoms, I feel almost completely normal, but right as I fall asleep, the neuropathy builds up, primarily in my hands, but also my feet. The neuropathy kicks in literally right as I fall asleep, and is pretty much there, as far as I can tell, the whole time I'm asleep. It's somewhat lessened at this point 8 months out, so that falling asleep isn't the issue, but after about 6 hours of sleeping, the neuropathy gets worse, and sleeping longer than 6 hours becomes almost impossible.
Does anyone have symptoms like this? It's so strange that, during the day, my hands and feet feel almost completely normal, and the neuropathy only manifests when I sleep. I've tried everything, changing positions, altering diet, everything, to see if I can change the outcome or make sense of it, but the neuropathy -- burning, tingling -- is always there, and I'm pretty much persistently sleep deprived.
At almost 8 months, I haven't improved very much, although I am feeling better. I can work and maintain a somewhat normal life, but am very restricted due to sleep deprivation. I've been to many doctors here in southern California, and none of them have seen this exact manifestation of symptoms. All my medical tests show things are normal.
Also, thanks everyone for posting on here and following up. This board has been immensely helpful and inspiring for me. I've been lurking for 8 months, finally joining the group.
How much B6 were you taking before you became symptomatic? I am at my 8 month recovery point after 200 mg daily of b6 and other assorted poisons/vitamins for a year. Unlike you, my symptoms have shown no favoritism for day or night. I take magnesium if I am having a bad night, and it does help. Do you, or have you taken anything to help calm the nerves. I remember reading somewhere in my search for answers, that some people's neuropathy can be worse at night. Maybe this is the case for you, either way I am very sorry you are having to deal with this. I agree with you that this site has been extremely helpful, and it has helped keep me sane : ) After 8 months, I too am a little better, although I have some old symptoms that have roared back to life and brought some new symptoms with them!
I'd like to thank everyone for their generous support and advice on this forum. I've determined that my neuropathic systoms are due to toxicity from fluoroquinolone antibiotics (Cipro, Avelox, Levaquin, etc,) rather than B6, although my B6 levels were elevated 15 months ago when the symptoms started. I would like to urge everyone to please, please avoid these antibiotics. I did not make the connection that Cipro was causing these symptoms until I had taken several courses of the antibiotic. The adverse events can be delayed by several months owing to DNA damage. I just want to wish everyone healing here and thank you for selflessly devoting your time to this forum.
I was just diagnosed with B6 toxicity and peripheral neuropathy. I have suffered for almost 6 months, have seen numerous doctors, been hospitalized, etc and finally had a neuro that conducted an EMG, then blood work that determined high B6. I don't take supplements, but do eat a diet pretty high in B6 (thought it was healthy). The doc put me on Gabaprentin, so I just started taking that. After doing some research I have no idea what I should even be eating. I also have very low blood pressure, sometimes low potassium, lesions on my liver and thyroid. Can anyone give me any advice on what I should be eating or if in fact, I can detox by just cutting down on B6 foods. I have been out of my normal life for 6 months now and its getting depressing.
B6 blood test shows what is in the blood not what is in the cells. A blood test can show high and the cells can be deficient.
To know where one is with B6 one could do functional testing. An OATs test (organic acid test) has various markers. Xanthurenate on at OATs test is a marker for B6. "Functional marker of pyridoxine insufficiency. Metametrix (has joined with Genova) has OATs test.
I just had an EMG that came back positive and I have B6 toxicity. Pretty much the same symptoms you do. my level was 45 and I was told its supposed to be 20. They think this is my problem. I don' take supplements but do eat a diet high I B6 which I have stopped. I really have no idea what to eat!
Not sure if you had the testing by now, I am new to this site. Hope you are better!
High dose B6- taken with all the other Bs plus magnesium has been an absolute miracle for my entire family. I think the key is to take it with at least 400 mg of magnesium. ALmost all symptoms are gone- I could tell within a short period of time that we were reducing inflammation, because our faces didn't appear swollen anymore, and we could tolerate most foods, when previously we would react. Arthritis and joint pain is gone! Depression/anxiety GONE. We take about 200 mg a day- we have had chronic Lyme diseae which means one is very low in B6 and zinc specifically. B6 is a natural anti-inflammatory, repairs DNA, is a natural anti-depressant, etc. I am very surprised at some of these posts. Maybe the missing link is making sure you take enough magnesium? Magnesium is known to nutralize all of the negative effects associated with B6. All of the studies on Autism and high dose B6, cancer prevention, etc almost ALWAYS include at least 400 mg of magnesiuim with the B6, as B6 gets the magnesium into the cells:) We also take hefty doses of all of the Bs, makng sure to keep a balance- and nasal methylcobalamin (Methylmate)
is there anything you can do to rid the b6 toxicity? ive noticed the involuntary twitching as well. i am concerned. i just came across this post this evening.. i suspect something is up. i am concerned. what would be the best way to test B6 toxicity? should i stop taking all B vitamins and B12 as well?
I've just been through this B6 problem. If you get it bad enough it mimics early stages of ALS and even MSA. I started having trouble walking and was 100% certain I had ALS because I also had twitching, spasms and cramping. Also visual disturbances, bowel changes, and urinary issues. Plus tingling in fingers and toes, and numbness. Doctors and first neuro were clueless, one idiot said I needed a shrink. EMGs were fairly normal, second neuro ordered a B6 test and bang, very high levels. The vitamin companies are clueless, I was taking magnesium pills and unbeknown to me each had a large dose of B6. Plus I was taking a mega B. Some pills are 200mg of B6, this is toxic. Every supplement with B6 needs a warning on the FRONT, because this is a dangerous vitamin. It is an important vitamin but you only need very small amounts. I am only just starting recovery after two months or so off the pills, but if I eat fortified cereals the tingling and needles come right back. Can't find anything about detoxing it, except maybe drinking some alcohol. Perhaps some sauna time, sweat it out?
I've been reading through many of the posts looking for information. I hope everyone is improving. My recent blood test showed my b6 levels at >100 with a max limit of 32.8 ug-L. My neurologist says its not an issue; however, I do have some of the symptoms plus one I haven't seen specifically mentioned here. I've been taking emergenC each morning for a couple months, which has 10 mg (500% RDA) b6 and then added multi with 4mg (200% RDA) b6. Shortly after adding multi, my sciatic leg pain came back hard, and I had mostly left side weakness, off and on, some tingling in little fingers and foot, cushion foot, fatigue, foggy head. The one symptom I haven't seen mentioned is random, intermittent throbbing or shooting pains in the head. I have them on my left side and my neurologist thinks I have trigeminal neurologia BUT I don't fit the classical description of SUNCT disorders. My MRI is fine, and I am hoping the head pain is caused by b6 toxicity and low magnesium. I just quit my supplements two days ago, and have been drinking magnesium citrate throughout the day. I also see an acupuncturist. The shooting pains seem to have subsided, but I still get frequent "throbs" on the right side, mostly along my jaw up to my eyebrow, sometimes over the cheek bone. Has anyone else experienced this in association with b6 toxicity?
Suffered from b6 toxicity for about a year from simply taking Flintstones vitamins. Numbness, burning skin, headaches, dizziness, etc. I stopped taking the vitamins in oct 2013 and my symptoms began to slowly decrease. I "tried" to exercise as much as I could at the time. I started eating healthy (which meant eliminating a lot of the foods that contained high b6) and drank nothing but water. It has been a long slow road, but things are better. Now, I am still sensitive to foods that contain high b6, but symptoms are much milder and short lived compared to months ago. I try to stay clear of those trigger foods as much as possible. I have also found that high b6 levels depletes the magnesium in your body. Low magnesium can cause a lot of the same symptoms as b6 toxicity. Hate for everyone to go through these dreaded symptoms once again after their recovery. Keep positive everyone.
Glad to see a new poster on this B6 subject, I wish some of the old ones would come back to update on their progress. To JulesG77, I have been off the B6 for two months and some symptoms have improved, mainly that my legs have gotten stronger, but I still have a lot of muscle twitching and weird aches and pains. An endless list of symptoms really, much more than the so-called sensory neuropathy mentioned in the texts. My muscles seem to quiver when under strain for any extended period, it makes exercise hard.
Hi there, I am eight years past my B6 toxicity and strong and healthy. I have no residual issues or symptoms. The healing process took a couple of years and I got worse before I got better. I do not have to avoid any real foods. I do avoid any vitamins or processed foods that are supplemented with B6. I take lots of extra Magnesium and B12 as those got low for me while my body was recovering. Working with a Naturopathic Doctor made all the difference.
Savmay - May I ask if you had a lot of muscle twitching? And if so did it take a long time off B6 for this to improve? I have had many symptoms, I am two months off the B6 with only slight improvements, some things possibly worse.
Yes, the muscle twitching was quite annoying and concerning and took the longest to go away. The nerve pain got worse before it got better and the twitching might have lasted for a couple of years (to varying degrees and finally lessening) after the diagnosis and during healing.
First time posting, my symptoms started on the first of the year (2014) I know happy new year. I was hiking with my wife and felt very fatigued, my hands and feet started tingling and then the next several weeks brought insomnia, jolts of electric through my legs and feet, my nerves were very twitchy, involuntary muscle movements and very jittery. Prior to this i was a hard working 47 year old business owner. I was lifting weights 4 nights a week and felt great. Befor each work out I drank a pre work out drink loaded with b vitamins and also took daily vitamins including a b-50 complex that I took for years. After the symptoms started I was no longer able to lift so i stopped taking the pre work out drink. After doing all the usual blood test and doctor visits and not getting anywhere I discovered this site and decided to test for b6. I was 83.7 and normal range was 2.0 - 21.5 almost 4 x high normal. I stopped taking anything with b6 in it and quickly started sleeping better my energy started comming back, my nerves settled down, For 2 weeks or so I was convinced I was on my way back to normal, then I decided to start detoxing and woke up the next day dizzy and week in the legs, this has persisted for about 3 months, now my legs are getting a bit better but the dizziness remains. Some days are better but its always there. Im able to work but I get through the day largely on will power and I am completely shot at the end of the day, working out is out of the question. I have scheduled a neurology appt. to make sure my self diagnosis is accurate. Looking forward to feeling normal again. Will up date in the future.
Sounds much like my symptoms, looking forward to your updates. I will do the same. Currently, a bit over 2 months off B6. My symptoms seem to be changing more to muscle aches, lately a stiff neck, still lots of twitching, also occasionally crampy feelings in bottom of feet. Others on here say it gets worse before it gets better, I hope that is what is happening. Thankful to be able to wriggle my toes when I wake up each day!
Hi, I'm new on here and am suffering with some symptoms that I think may be related to too much B6, so was wanting your opinion.
I have been taking 100mg Vitamin B6 plus 10mg in a multi for around 6 months in preparation/during IVF treatment which failed around a month ago.
This week I woke up - Day 1 - extremely nauseous and vomited once. Had fever.
Day 2. Much better, no fever, nauseous only. Took my vits (as above) in the evening and immediately felt worse - tingly, numb.
Day 3 - still a bit nauseous. Again felt better in the afternoon, took my vits and within 20 minutes I was laid up in bed with numb tingly sensation all over my body particularly legs and feet.
Day 4 - woke up feeling absolutely dreadful. Numb all over. So nauseous. Got gradually better through the day, particularly if moving around. Figured out that maybe b6 had something to do with it so didn't take any vits instead today. Felt better in the afternoon, except still nauseous after eating. Almost had full feeling back by the time I went to bed.
It's now 3.30 in the morning on Day 5. I woke up with really numb legs, shooting pains in my legs, shaking (not sure if from anxiety?) - no fever. Have phoned a 24hr medical helpline and am awaiting their call back, but even being up and out of bed is helping my legs get their feeling back. I'm still nauseous though.
What does anyone think? Does this sound at all like b6 toxicity to you?
I thank God that i found this post when I did. I just bought all the B vitamins (including B6) as well as super B complex and other vitamins yesterday to try and help this severe fatigue I have had since being on the fentanyl patch.
I only took a B6 and super B complex ONE time and i threw them away. i was torn on whether to buy a good multi vitamin or individual ones and i chose the individual ones. glad I did so I can totally avoid B6 completely.
why do they even sell B6 vitamins?? i can understand being able to find them at GNC, etc but every grocery and drug store carries them and I have NEVER heard any warnings about B6 toxicity until today.
I wanted to update one year out...I have came along ways but still have a ways to go...this had been a year from hell..I have been tested for EVERYTHING, every possible imaging test done, blood, scopes, laperoscopy etc...my pain has changed what was a sore muscle ache, pins, needles, crawling feelings has now changed to sore pulling muscles in my hip and lower thighs...I can go weeks with little or no pain and then like tonight it all hits me.. the one thing that has never gone away and probably never will is my tinnitus in my left ear..I am upset with myself for taking 14 days of b complex 50mg...it turned my life upside down...my hair loss has slowed, my anxiety has lessened maybe because I know what I don't have. I try to live each day as it comes, I am going to try a chiropractor next week to see if it will help any. I have been to over 15 dr's and specialists, naturopaths, I did find out I have the mthfr homo type mutation so that causes issues with processing folate and b12 but homosystine levels were normal and methalfolate just made things worse so I am not taking anything, just letting my body try to repair itself...there is no reason supplement if we eat right and I learned the hard way....if you are just starting out, as people told me..keep going!! it will get better and I pray I will one day be back to me if anyone would like to message me freel free. I had great support from people on here and would like to return the favor
If it makes you feel any better I am the same. I believe the muscle pulling may be from nerves sending the wrong impulses when you move. I too am finding this difficult, I can't help thinking I have ALS, but ALS tends to progress only for the worse and I have good days and bad. Each day I wake up and I can wriggle my toes I rejoice, but I have very low tolerance for any muscular work because the muscles start shaking. You did make me laugh saying you had the "mthfr homo type", this whole experience has been a mthfr for me.
Glad I could make you laugh haha :) it is a MTHFR!! , I have to tell you this changed me forever. My muscle pain is almost gone in my legs but I have recently become very dizzy with my tinnitus, I think its more allergies or sinus than anything but since poisoning myself with vitamins you never know. as others told me, its very slow, better days will come, I have gained 15 pounds back of teh 45 I lost, my hair isnt shedding as much and I try to just take it one day at a time. Remember your body is working everyday to regain normal function again. The human body is an amazing thing and it will repair itself if we dont add supplements it doesnt need!
My daughter suddenly started fainting for no reason at school the beginning of last year, after a range of tests and seeing 2 different Neurologist the diagnoses it is in her subconscious mind and she need to se a psychiatrist. I have done a search on her symptoms pins and needles on fingers and feet, dizzy feeling, severe headache, loss of use of her legs at times and the seizures/fainting. A lot of people with similar symptoms used B12 or B6, When she was discharged from hospital I started with 2 Super-B tablets a day and the fainting/seizures stopped, but not all her symptoms, I eventually found a site for a laboratory for inherited metabolic defects and send a urine sample of my daughter to them for a test, the professor diagnosed her with a possible pyridoxine dependant epilepsy, and suggested that she use 50mg pyridoxine (B6) per day, further tests has to be done in Europe to confirm the diagnosis.
She got better using the B6 but about 3 to 6 months later she show signs of elevated levels (battle to wake up and breathing difficulty when doing intense sport), can not be tested in our crappy country so we are playing in the dark, I stopped the B6 for about a month and her headache's returned, she was forced to start with B6 again.
She has now been using B6 for more than 1 year, I am just concerned that something else is the cause, unfortunately I could not find medical doctor that know this stuff in South Africa, the only ones that know about this stuff is PHD doctors at the labs, and they are not allowed to deal with patients directly, so now I have to go to a GP, tell them what tests need to be done some of them will question the tests and will not do it because of a lack of knowledge.
After reading some of the posts I am concerned that my daughter already has elevated levels of B6 we cannot test it in the country, but if we stop it she get worse back to seizures, how do you handle this the seizures or the risk of toxic levels, if we do the B6 test in Europe it can a few weeks to 3 months before we get a result.
I suggest you find the minimum dose of B6 that will relieve her symptoms. This would be by trial and error. That way you can at least minimise the chance of B6 toxicity. The B6 blood test is available internationally, you may be able to post your daughter's blood to a lab somewhere. I am not a doctor, this is just an untrained person's suggestion. Her symptoms "pins and needles on fingers and feet, dizzy feeling, severe headache, loss of use of her legs at times" sound just like B6 toxicity, but could be other things. Beware the neurologist who said it's "in her head" - that possibility should only be considered after everything else is excluded with tests.
Thanks for your reply, when your body require more B6 or has low B6 levels the symptoms are similar to high B6 levels, both effect the central nervous system. I finally found a paediatric neurologist with some knowledge, apparently this is more common with babies, you get babies born with this kind of epilepsy, it normally is lifelong condition, meaning they have to use B6 every day of their lives, but the intake has to be monitored.
My daughter have never used B6 prior to her seizures or first symptoms started.
I had a chat with a PHD, a specialist in the field, he suggested she do an AASA test, apparently only 4 places in the world can do this test, it is used to determine markers in your urine and blood, from what he say normal blood tests on its own is not accurate enough as other factors should be accounted as well, that is why both urine and blood levels has to be checked.
From what he said that 50mg Pyridoxine should not cause toxic levels of B6, it can at times produce elevated levels depending on your diet, but to a toxic level state you need to take hundreds of milligram if not grams of B6.
Everybody handle this different and from different scientist you get different results.
I know with 50mg she already showed symptoms of elevated levels at times and then we just leave the B6 for a day or so or until she start getting headaches then we start with the B6, if we do not start she get seizures.
Why I got so concerned is that a lot of viral infections show same symptoms as toxic levels, she had abdominal pains and all her muscle's in her body in pain as well as being nausea, it turned out to be a viral infection, now she complain of a lower back pain on the spot of the spinal tap that was done a year ago, but her muscle ache started clearing up, she still experience pain in her upper legs, but it look more like a viral infection causing it.
If she has low levels of B6 then she get restless, walking up and down the passage at home, she is not doing it currently.
Can B6 cause white patches at the back top inside your mouth?
I was diagnosed with B6 toxicity in June, 2014. I have both fibromyalgia and Lyme Disease, but I have never felt such pain in my life. My ankles and feet are so swollen I can barely wear shoes, my body flushed red all the way to my knees, and the burning pain was everywhere but my hands. The ply hand problems I've had are itching between the fingers (and itchy breasts), and having trouble folding small items. My vision is blurry and I am super tired. The burning is like a blow torch and even burns inside my stomach. It is worst of all in my mouth and every night my tongue turns red and cracks open. My mouth and eyes are dry and my skin is so dry it is like thin parchment. I was taking 100 mgs. daily, half of it pyridoxine and half of it P5P. Most chronic Lyme patients are told to take a lot of B vitamins, since the disease steals them. I have numbness on the bottoms of my feet any time I put my feet up and rest. I had been told food was not an issue, so I have learned a lot here about why I feel so much worse when I eat peanuts, bananas, tomato sauce or fruit or veggie juices. Losing my bran cereal has been the hardest, and has messed up my formerly under control IBS. I can only eat hot oatmeal or puffed rice cereal. I've been off B6 for 3 weeks now and I pray this gets better because I will not live like this. I had taken B complex for years and had some milder burning every summer, but docs had no clue, until I added a multivitamin to it, and I guess it was too much and kicked it all into high gear. Mine is also much worse in summer. I do not want to have expensive biopsies, as it will not change the treatment that I can see. I cannot tolerate steroids, Neurontin or Lyrica. I am taking Benfotiamine and R-Lipoic acid. I have taken digestive enzymes for years and also have severe malabsorption. I got the worst breakout of rosacea ever when this happened. Lyme patients have toxic livers, so they should all be told about this. Lyme docs routinely prescribe B-100, 3 x daily! I would like to see this whole forum sent to the FDA.
First time posting, although I have been reading this forum for a few months now. Thanks to all that contribute for the well being of others. Especially those who have substantially or fully recovered and have been giving feedback/answering questions.
I have been diagnosed with B6 toxicity by the neurologist in May. I can write a booklet on my experience and suffering. One day, I hope, when I recover, I would like to come back here and post that booklet :) At this moment, though, I don;t feel strong enough to do that.
I have a question to everyone and anyone who has been diagnosed with B6 toxicity here. I have many symptoms (such as feet burning, arm and leg weakness, neck pain, facial burning, shaking hands and legs due to weak muscles, twitching, etc...) - but, a new one that I have been having for a few months now has been really bothering and scaring me!
Does/did anyone experience PROPER TREMORS?
To be clear, I don't mean the "buzzing sensation" in the feet, for example. I don't mean the "vibration feeling" like a cell phone in one isolated spot. I don't mean the "electric shock" like feeling that hits the feet or the hands. I don't mean the "pulsating" nerve feeling. I don't mean muscle twitching. (I have all these as well!!!). I mean a TREMOR, which is very rhythmic and affects the entire limb/affected area in an oscillating mannert. My head and right arm tremor - so far only at night, when I am sleeping/turning from one side to the other in the middle of sleep. It is very scary. It only takes a short time but I am really scared this is due to another issue and not B6. Nina, Savmay, Contessa, helz_belz or anyone else? Please share if you did experience proper tremors yourself. How long did they last? Did they appear later in the recovery or were they there from the beginning? etc. etc...
An update on my situation, I went to the neurologist and told him about my b-6 level being 4x higher than the high normal and he dismissed it and told me I was depressed. When I asked another question about b-6 toxicity he declared I was also OCD because I couldn't let it go. So not much help at all. I am going in for further testing with another neurologist. I believe I am slowly getting better, it's been 8 months since this all started and I do see signs of improvement, the tingling and burning in my hands and feet have gotten much better, the burning patches on my skin have also improved. I am still dealing with weak legs and am still off balance but not as bad as before also some random nerve pains that come and go. My energy has improved, and I am able to work harder and longer than before. Still not sleeping real well. I have noticed these symptoms seem to cycle so what I am feeling this week might be different than the next. Tomorrow is another day and I think I am heading in the right direction. Never give up!!!
Really glad to hear that, Mulchman. What you have described sounds very "typical" for others' experiences - if you can call anything "typical" with B6 :)
Have you had any tremors? I just posted a detailed question about it right above your post... Wishing you and everyone else well...
Glad to hear from new and old posters. Can confirm I have experienced all your symptoms fussy fussy, including tremors. Also, if I hold something for too long I'll get a tremor in the muscle. Had a sporadic body tremor at the worst, and I've had a bit of buzzing. Crikey, so many symptoms, B6 seems to smash everything. Worst tremor I had was while lying on the neuro's table, which was good because usually when I see the neuro nothing happens and it makes you feel like an idiot. I am finding it a little harder to self-induce cramps in my feet, legs and right bicep now so I believe I am getting better. Still plenty of scary symptoms. Leg strength has improved but when standing I am constantly changing legs which I guess means they are still weak. Annoying symptom right now is a mild ache when I use a muscle, as if it is getting fatigued, when it is actually doing not much at all. I have a question for you - I pulled a small tendon or muscle in a finger while playing guitar and it won't heal, has anyone else noticed slow healing? Also have had dry itchy skin on front of ankles, dunno if this itch is part of the B6 package tho. Mulchman, that neurologist was a fool!
thank you for your reply. I think you and I started healing around the same time, right? I am in my 4th month right now. I do have to change legs when standing as well since my leg strength is still not good, though I seem to have better days now. I definitely have fatigued muscles as well. We were back to school shopping yesterday with my sons and I could not hold a bunch of notebooks in my hand, with arm folded to my side, while waiting at the register line for even a minute...
Regarding the slow healing - many others have noted too, that the damage seems to be most where there was a previous injury or injury sustained during the B6 toxicity. I, for example, before knowing I had B6 toxicity, tried to do light weights at home since my muscles were so weak. Well, my neck and upper shoulders got even weaker, shakier and sore since then. I was way too weak for the weights and must have hurt my ligaments/muscled there. While everything else is slowly getting better (I hope), I am in physical therapy for those areas for 3 months now. I think your finger is falling into the same phenomenon here.
About the itchy skin on top of ankles, I have had that at some point but didn't bother me too much. I think it is the sensory nerves waking up. Some others, if you go back a few years in the posts, like Heimen, if I remember correctly, complained about that as well.
Regarding your "tremor", just to double check, I don't mean the weakness related shaking in a muscle while using it or twitching while at rest (like I said in my original pots, I want to be very specific about it since this is the symptom that scares me very much). Mine is a proper tremor as if the starting point of the muscle that is tremoring is attached to an oscillator and it will very rhythmically, while at rest, simply tremor for a while before it goes away. Is that the type of tremor you have experienced as well? I don't mean to second guess your understanding of a tremor, I just want to make sure I am not having false hopes... I hope you know what I mean.
Thanks everyone. I hope to hear back from you, B6poisoned and others, if you could get back to me about the tremor question. I pray for us all.
I have had the tremor you describe fussyfussy, tho not in my head. I also had an ear drum vibrating at times, and I had facial cobweb sensations. Tremors don't last long with me, maybe a few minutes at most. It is interesting about it hitting previous injuries, I had an old knee injury that occasionally gave me grief, but not often. When the B6 toxicity happened the cartilage seemed to fall apart, I could almost bend my leg the wrong way, it felt unstable. Don't know if it was weakened muscles that caused this, or the B6 affecting the cartilage and tendons, or both. I also had sciatica in my right leg from a busted disk, which healed, and that leg has been most affected by the B6 in terms of twitching. I too have had problems holding things, the muscles fatigue quickly but I do have strength there on demand, the muscles just start aching very quickly, no stamina. Easy to induce a cramp in some muscles, but this is improving. I have had the nerve running through my neck into my tongue hurting, but that got better. A big nerve in my shoulder and down my arm hurt when I coughed, and the shoulder got weak, but that got better. Lately I have been feeling warm in the skin, like a flushing. But it might be because I am taking a couple of things to try to help. I seem to twitch more if I take largish doses of vitamin D, so I stopped. I take B12 sometimes and folate and iodine, which may be helping, but I am cautious because pills caused this problem. I am taking amytriptaline which helps me sleep, melatonin in the evening also helped with sleep, but I stopped it because it cost a lot. I had visual disturbances early on, little white streaks in middle vision with eyes closed and white cloudiness along bottom. Still have some of that. Most symptoms are just a nuisance, I'm actually quite happy because I was initially 100% sure I had ALS, I now feel that I am living a second life. There seems to be less known about B6 poisoning than ALS, this is the only decent forum thread I could find. I suspect a lot of BFS people are B6 toxic.
I have had issues with my ear drums vibrating and clicking but they seem to have gone. My tongue still quivers and I have many other symptoms still. My eyes used to be very dry and felt strained, that got better, thank God. The most worrisome is the tremors, as I said, as well as the very tight muscles in my neck and upper shoulders which result in my arms quivering from the tightness. At the beginning I had burning feet which turned to vibrations and now are much better, only occasional buzzing. When I was still on B6 I used to get a sudden cramp on my shoulder(s), as if someone hit me with a bat, then I would feel electric shocks running down my spine, to my knees, making me so weak that I could not stand. With it used to come fast heart rate and anxiety as well as a feeling of faintness. Then I would be very fatigued - unable to even sit properly. Since getting off the B6, those acute episodes stopped, though I do feel overall weak, fatigued on some days. I am left with Acid Reflux, IBS and got diagnosed with SIBO as well as H Pylori when this all started. I suspect I might have had H Pylori before then with no symptoms, but B6 increased its virulence and caused the rest of my gastro issues. Loooong story. I also have had ostheo-arthiric symptoms, especially in my hands, with this B6 thing. The hands both simultaneously swelled up, got red, warm and achy a few weeks after I stopped the B6. About a week later, these went away but I was left with a pump on one of my wrists from the inflammation and hand weakness (the weakness has gotten better now). As I said, I could write a booklet on this! I am only writing these details to give comfort to others who might have similar wacko symptoms that are not documented as typical B6 toxicity symptoms and therefore they worry.
I am glad you are feeling much better, B6 Poisoned and your ALS fears are allayed.
I hope we all recover some day.
One question to you and everyone: Have you been plagued by weak and stiff neck muscles through this? Do you feel that that makes your arms a little shaky since the shoulders are so tight?
I agree it is good to detail the symptoms, it gives reassurance to others who might not believe B6 can cause all this. I do not have the tightness in the shoulders, but I have it in my leg, particularly the right one which was formerly the sciatic leg. It was OK until the B6 toxicity. My foot now becomes very stiff if I point it down and twist it, almost spastic. I thought this was nerve damage. But it is no problem walking around. Interesting what you said about the twitches/shock moving down your spine, if I provoke my lower right leg by turning the foot around, it makes the leg twitch more, and sometimes there will then be more twitching in the upper body, as if it is all linked. I think that the processes going on with this B6 are complex, I have noticed that many symptoms are the same as for B6 and B12 deficiency. B6 is a catalyst I believe, it may be that it has depleted something else, or switched some genes on or off, or provoked auto-immune responses. Or it's just wide-ranging nerve damage. The long healing time mentioned by others on here is interesting, it is probably even longer for older people. At least one here has said it triggered auto-immune diseases. I agree with what all said about getting worse before getting better, and that every day can be different, it is a truly bizarre situation. Mine is made more complex by the fact it all started with muscle damage from Lipitor, I was taking supplements to try to heal the damage and unfortunately I picked three that all had high doses of B6. Blackmores magnesium pills for example say nothing about B6 on the front label, only the small print, but each pill has a huge dose of B6. Add this to a B vitamin each day (more B6), Swisse zinc pills (more B6), plus fortified foods and sports drinks etc and you are soon in the toxic zone. It all seems to be flying under the radar, should be a B6 warning on all products that contain it.
Yup, it all seems connected. My upper body seems to be more affected than the lower one, so the cause and affect direction seems to be the reverse of what you said. When I stretch my upper body, say my arms, the "tightness" / "weakness" feeling starts traveling down all the way to my legs! I asked the physical therapist if these muscles are at all connected, and she said no. But then again, I know what I am experiencing!
I was only on 50 mg of B6 as part of a B complex from Whole Foods for about a year before things went crazy. My levels were 78.6 on a scale of 2 - 21.7. I suspect they were much higher earlier since I had been off the B6 for a while before testing.
Anyway, thanks for responding :)
Re your osteo symptoms, I had joint issues while toxic, the wrists kinda popped and cracked, and my ankles too, it is was weird. That was one of the first symptoms and one of the first to get better. Had some reflux myself lately, seems to coincide with skin flushing and a feeling of warmness. Dunno if the reflux is B6 damage related. I tend to think it is part of the package. Re your shoulders, while I never had stiffness, it was an odd feeling in the main nerve running through my shoulders that was another one of the early symptoms - it creeped me right out. Wasn't a pain, twaz a hard to explain sensation, an awareness of the nerves. Pain on top of the feet is the latest thing, it comes and goes. Had sore thumb muscles two or three weeks ago, has improved greatly.
I had burning pain on top of both my feet, that was one of my earliest symptoms that took me to the neuro. It went away for the most part. Can't tell if your acid reflux is related to B6, but it is a documented B6 toxicity symptom I have come across, including on Mayo Clinic's website.
How do you tell a sensation or pain is in a *nerve*? When you made reference to your main shoulder nerve, how can you distinguish that it is a nerve and not ligament or vein or just some random spot?
Finally, with your stiff legs, have you ever had the sensation that the right side of your body was moving kind of "separately" from the left side of your body? It is hard to explain, but with my shoulder and neck/arm issues, I feel out of synch at times, as if my body is not moving in unison but rather one side feels different from the other - something like that.
everyone - *especially* those who healed fully
from what I read here, most people seem to complain more about issues with the leg muscles.
Could you please share if you had weakness in the shoulders/arms and the neck? I do have leg weakness as well but it is my neck/shoulder/arms that are weak and the muscles in those areas seem to tense up/quiver.
I found this text about B6 toxicity, by Ingvild Gangsaas, of the University of California, Los Angeles, it was released in 1995. It explains a lot. This stuff should not be sold as freely as it is.
In 1942, pyridoxine (a form of vitamin B6) was determined to cause severe weakness and
pathological changes in peripheral nerves and dorsal root ganglia in dogs and rats.
Although the non-species-specific effects should have suggested human vulnerability to
pyridoxine neuropathy, it was not until 1983 that human neuropathy was reported. In fact,
further studies demonstrated that humans were even more sensitive to the neurotoxicity
of pyridoxine than rodents (1). Despite these and other compelling studies regarding the
toxicity of pyridoxine, it continues to be abused. The reason behind this abuse is the
existence of unscientifically founded myths. In the following, the various myths and the
startling evidence against them will be presented.
MYTH #1: Vitamin B6 is water -soluble and hence not toxic in doses exceeding RDA
RDA recommendations of vitamin B6 range from 1.5 to 2.2 mg per day2. Extensive
literature suggests that vitamin B6 is toxic in doses exceeding RDA values. The
following outlines the findings of these studies (in chronological order):
(1) Seven adults developed progressive sensory ataxia and profound limb impairment of
position and vibration sense after consumption of large daily doses of pyridoxine (2 to 6
g) for 4 -40 months (3).
(2) Daily doses as low as 500 mg of vitamin B6 may result in neuropathy (5).
(3) Sensory neuropathy from low-dose pyridoxine occurred in individuals ingesting 0.1 to
4.0 g for 6 years (2).
(4) Photosensitive lesions, vomiting, and peripheral neuropathy developed in children
with Down's syndrome being treated with high doses of pyridoxine (1).
(5) 103 women demonstrated impaired neurological function while attending a private
clinic and ingesting an average of 117 + 92 mg of pyridoxine for a period ranging from 6
months to 5 years (3).
(6) Acute sensory neuropathy-neuronopathy from pyridoxine developed in an individual
ingesting 61 g for 3 days (2).
(7) Excessive amounts of pyridoxine appear to cause degeneration of dorsal root ganglia
(8) Daily digestion of a high dose B-vitamin was associated with an acneiform eruption
that promptly improved after discontinuation of the vitamin (6).
(9) A woman exposed for 13 years to high daily doses of vitamin B6 (up to 10 g)
developed sensory neuropathy with a slight motor component (2).
In general, most patients suffering from pyridoxine toxicity complain of progressive
ataxia, particularly in the dark (loss of visual cues), accompanied by numbness of the feet
and severe sensory dysfunction. This dysfunction is characterized by a decrease in joint
function and vibratory sense, a decrease in the sense of touch in the distal symmetric
distribution, and a decrease in the sensation of the lips and tongue. Standard electrical
studies reveal degeneration of large axons and small unmyelinated fibers reflecting
pathologic changes in the dorsal root and gasserian ganglia (5).
MYTH #2: Vitamin B6 is a safe and effectual treatment for PMS.
Vitamin B6 deficiency has been hypothesized to play a role in PMS via various proposed
etiologies: (1) disrupted estrogen metabolism in liver; (2) lowered dopamine and/or
serotonin concentrations; (3) disrupted production of essential fatty acids. The use of
vitamin B6 in the treatment of PMS and other gynecological ailments began in the 1940s
(7). In 1973, Adams et al. conducted a study that has often been cited as the rationale for
using the vitamin to treat PMS. Their study sample consisted of women who became
depressed after taking oral contraceptives with high amounts of estrogen and
progesterone. Fifty percent of subjects also exhibited signs of vitamin B6 deficiency.
Pyridoxine treatment was associated with improved symptoms of depression only in the
vitamin B6 deficient group (7).
After 1973, several open or anecdotal trials reported using vitamin B6 for PMS in doses
ranging from 40 to 800 mg/day with success (8). Double blind studies using 50-500
mg/day were also reported (7). An analysis of these studies revealed that most of these
studies suffered from methodological flaws including inadequate subject selection,
concurrent use of other medications for PMS or oral contraceptives, inappropriate
statistical analysis, and high-placebo response rates (7).
In addition, no good evidence exists to support any of the proposed etiological factors
involving vitamin B6, and women studied in protocols after 1973 did not appear to be
deficient in the vitamin. Vitamin B6 values in women suffering from PMS do not appear
to differ from symptom-free women (7).
MYTH #3: Vitamin B6 is an anti-neurotoxic, anti-edemal, stress- reducing, and energy
producing "super" drug (that also relieves PMS and asthmatic symptoms)!
Much of the abuse of vitamin B6 stems from confusion surrounding its properties and
functions. For example, a 1986 article in Food and Fitness being distributed at a
Californian health store in 1994 described the role of vitamin B6 as follows:
"[Pyridoxine] plays several roles in health, helping in the chemical conversion of food to
energy, as well as helping to maintain the central nervous system" (10). This is the type
of definition proffered by many lay articles that the general population reads! It
illucidates why many people begin self-medicating with very high doses of vitamin B6
that are furnished in numerous multi-vitamins. Most of the population is unaware of what
Vitamin B6 comprises and how it actually functions. The actual biochemistry of Vitamin
B6 is as follows: It comprises the compounds pyridoxine, pyridoxal, and pyridoxamine
(which can interconvert within the body). Vitamin B6 is a coenzyme participating in
numerous reactions (e.g., transaminations, deaminations, and decarboxylations) primarily
related to protein metabolism. The functions of vitamin B6 range from glycine and serine
interconversion; homocysteine conversion to cystathionine; niacin and serotonin from
tryptophan, formation of delta-aminovulinic acid for heme synthesis, and the conversion
of glycogen to glucose-1-phosphate. Scientific evidence fails to supports its role as an
anti-neurotoxic, anti-edemal, stress -reducing, energy producing, and asthma and PMS
treating agent (4).
MYTH #4: More is better.
Most people do not realize that excessive vitamin doses are likely to produce effects that
differ from normal function of the vitamin (i.e., more vitamin does not equal "enhanced"
vitamin function) (1). Indeed, these abnormal functions tend to be the injurious factors.
Interestingly, the effects of pyridoxine toxicity resemble those of pyridoxine deficiency.
Rudman et al. (8), proposed three mechanisms to describe the mechanism of pyridoxine
toxicity. They are as follows: (1) Pyridoxine is a member of the pyridine family which
are neurotoxic. The sparing of the central nervous system in pyridoxine toxicity can be
explained by the limited transport of pyridoxine across the blood-brain barrier, in contrast
to an unlimited gastrointestinal transport. Many of the cell bodies of peripheral sensory
fibers are located in the dorsal ganglia outside the blood-brain barrier, whereas the cell
bodies of the motor fibers are located within the spinal cord. This may explain the
selective toxicity of pyridoxine for the sensory fibers of peripheral nerves. (2) Although
some water-soluble vitamins depend on carriers for gastrointestinal absorption and hence
transport is saturable, pyridoxine moves via passive transport. Also, pyridoxine must be
converted to its active form, pyridoxal phosphate, via two enzymes, pyridoxal kinase and
pyridoxine phosphate oxidase. High circulating pyridoxine can saturate these enzymes
and then act as a biologically inactive competitive inhibitor of pyridoxal phosphate.
Therefore, a pyridoxal phosphate deficiency is mimicked. (3) Finally, an additional toxic
factor may reside in the impurities of the pharmaceutical product. FDA regulations allow
a 2% impurity which increases exponentially when an individual is ingesting megadose
amounts (9). For example, a recent epidemic of eosinophilia-myalgia syndrome in
individuals ingesting large amounts of tryptophan appears to be caused by a contaminant
in the production of tryptophan (1).
Finally, a recent book suggests that daily supplements of 200 mg of pyridoxine over
several months may result in a pyridoxine dependency when the supplement is
discontinued (9). Little is known regarding the physiological or psychological basis of a
vitamin B6 abuse-induced dependency. It is interesting to note that many individuals selfmedicating
with vitamin B6 began with innocuous amounts and increased them
dramatically over time. This finding may indicate the development of tolerance and a
need for a higher dose to produce the same effects, or perhaps the disruption of
homeostasis. One can also consider the psychological dependence potential of vitamin B6
if individuals believe the vitamin to provide them with stress-relief and energy.
In conclusion, the scientific evidence regarding the dangers of vitamin B6 megadoses is
overwhelming. Despite fifty years of such evidence, the abuse persists based on the
existence of myths accepted both by the general population and members of the medical
community. With the popularity of anti-oxidants and the general interest in vitamins as
preventative health agents, it is imperative that these myths be dispelled.
I have a question about visual disturbances you (and others) mentioned. You described it in an earlier post as "when eyes closed" and "white clouds at the bottom". Were the clouds at the bottom only when your eyes were closed as well, or were they actually an obstruction to your sight?
Did you experience them while still toxic or during the recover period? Did they come and go?
Yesterday I had a period of about 30 minutes during which my peripheral vision in one eye got weaker and weaker before it went back to normal. I was outdoors on a highly humid day with high barometric pressure. I had never had it before. I wonder if anyone else experienced anything similar?
One of my first symptoms when toxic was an eye shaking in a fine tremor. This only happened once early on. About this time I had some white flashes in my peripheral vision with eyes open. But the more disturbing thing was small but well defined white streaks in my central vision which I would see when I closed my eyes and moved them. This still comes and goes. A white cloudiness mostly along the bottom periphery with eyes closed is strong at times. I have got a few dark floaters during the day but I may have always had them, it is hard to remember what was normal. I am more suspicious about things now, so I notice anything. Can't say I've had any great visual disturbances with eyes open, there were a couple of periods with blurry vision and dry eyes. Sometimes I'll get tinnitus for a few minutes, but it goes away.
It was a whole eye tremor, and hasn't happened since. But I still small twitches around the sides of my eyes near the eyelids, it comes and goes. Right now I have a very sore diagphram muscle, it got sore while I was walking up a hill. I've noticed that various muscles become sore, and then recover, hopefully it is part of the healing process!
I have twitching around my eyes that come and go as well, as well as my upper eye lids.
Yes, I have been having such sore muscles, too - pretty much chest up to my chin! It is really weird. Last night both my arms, starting at the shoulder joint started aching simultaneously and then thank God it got better.
Like you said, I hope that it is part of the healing - for me, for you and for all of us.
I have a naturally occurring high B6. It is nearly 400. I do not take any supplements. I do have neuropathy - just tingling in hands/feet/around mouth. No big deal. May have "short muscle neuropathy,"
Could this naturally occuring high B6 be causing the symptoms? My neurologist says "no," and that this is nothing to be concerned with since it is naturally occuring (gut).
I have a naturally occurring high B6. It is nearly 400. I do not take any supplements. I do have neuropathy - just tingling in hands/feet/around mouth. No big deal. May have "short muscle neuropathy,"
Could this naturally occurring high B6 be causing the symptoms? My neurologist says "no," and that this is nothing to be concerned with since it is naturally occurring (gut).
There have been other people posting here whose B6 levels were elevated without supplementation and they were suffering from neuropathy symptoms. So that makes one wonder if it is indeed possible to have those symptoms even though the elevation is naturally occurring and not through pyridoxine supplementation.
On the other hand, I have read that the natural form is a different type of B6 that would not cause all the horrendous symptoms that pyridoxine form causes. Not being a doctor, I can offer you only this much, so you will need to check with your doctors and perhaps get a second opinion, etc.. Wishing you well!
Does/did anyone have issues with their toes?
The toes on my right foot started moving on their own - kind of like piano keys, moving up and down. They also move to the side a little. Not painful, not like spasms, but as if they are being pulled slightly.
Also, I have been dizzy for three days in a row now with a headache. Dis anyone experience this? Wondering if B6 related or not.
Ha, got a headache and dizziness today. Have had plenty of small muscle movements throughout body, like a tiny spasm - probably same as what is happening with your toes. At the worst my big toes would get stuck in the upright position, that was scary.
This is the 4th day into my dizziness. I have had dizziness before, but on and off. This one has been going on days in a row (not dizzy thru the entire day but episodes throughout the day, nonetheless). Yesterday I had a blood pressure spike, on top of that, which is unusual since my BP runs low.
Funny you should mention blood pressure, mine has been up and down. I have had feelings of feeling warm and flushed, and at other times my fingers go cold. Damage to the regulatory nervous system? Others have mentioned it. I recently doubled my B12 intake and have improved, but maybe it is just a coincidence. Seems silly taking pills trying to cure something caused by pills ...
An update, I saw another neurologist in the beginning of September he believes that my symptoms are likely from b-6 but is sending me out for more testing to rule out several other possibilities. The last two weeks my tingling/ burning hands , feet and skin got worse and my energy level plummeted also a little bit more dizzy. I am still better than I was in spring and early summer. It's not much fun going backwards when you were sure you were on you're way to recovery. Hopefully this is just another bump in the road.
Hi Mulchman - sorry to hear of your setback. I am six months out and going through a relapse myself. I got gastro and this has really brought on muscle aches, extra twitching, nerve pains, and feelings of weakness that I thought were going away.
The good news is that this yo-yo recovery has been reported before by others on this thread.
I have a hobby farm, and I like manual work, but lately I just want to lie on the sofa.
Yasko is wrong about sulfate. Sulfite and sulfate are two completely different things. Sulfite is toxic. Sulfate is NOT toxic, it does not deplete enzymes, in fact it's needed in order for the pancreas to produce it's digestive enzymes.
Sorry to hear your having a tuff time to, this is definitely a yo yo recovery, but I'm feeling a bit better this week. I have found that when I'm doing Manual work I feel better, but it is tuff to get started. Through all of the testing I've been through I tested positive for 1 copy of the mthfr gene. I don't process follicle acid/ b-9 very well. I assume I don't process b-6 well either. I think when we figure this all out we will find several components that lead to this situation. Hope your feeling better soon.
Cheers for that. I am the same re manual work, once I get going is OK, but sitting behind a desk my feet and lower legs become very stiff. Last four days I had strong foot pain, but today I feel great! Can't work it out. You are probably right re multiple issues or everyone would be B6 toxic, as so many supp pills have added B6. I may have the MTHFR issue as I had big trouble with Lipitor and B6, it might be a metabolic issue behind both. B6 toxic folk should probably also avoid fluoroquinolone antibiotics.
I have never taken B6 and am only now on B12 for 4 months...how did I get B6 toxicity? Is it possible to just get it from food? I am on a strick Autoimmune Diet...meat, some fruit and tons of greens...any comments?
Enzyme issues mean you might not process B6 properly. "Polymorphism of Enzymopathy" I think is the term used. I don't know any more about it, suggest you see an endocrinologist, and avoid high B6 foods. Also, B6 is hidden in a lot of pills (read the small print) and is added to some foods.
I am 47 year old male. I have autoimmune disease called pernicious anemia (shortened as PA or b12def) which means I am not absorbing B12 vitamin from natural sources. Therefore I have to take B12 injections regularly.
When I was diagnosed I was told to take some B complex daily so I wouldn't be deficient with other B vitamins. I was diagnosed on August 2012. I started B complex at the end of 2012. The B complex (Jarrow) I was using has 35 mgs of B6 (25 mgs of pyridoxine HCl and 10 mgs of P-5-P). Quite small amount.
I have lived quite normal life with my disease. My B6 related symptoms started creeping on 6/2013. I had weird tingling sensations on my feet when stretching forward while sitting. I started to get some muscle twists on 8/2013. I had also weird sensations on my face.
I had full MRI and ENMG on 9/2013. They did some clinical neuro exams as well. All the tests were clean. (I thought I had a MS or maybe worse - ALS).
At the end of the year 2013 my physical strength and stamina was declining. I started daily B12 injections on 3/2014. They were helping.
I had several appointments with several GPs. Some of them had no clue. One of them was suggesting I had another autoimmune disease. I had an appointment with an older GP on 5/2014. This GP wanted to see vitamin D and B6 values. Vit D was lowish. Vitamin B6 was 490 nmol/l (ref. range 28 - 121 nmol/l). Four times higher than upper limit!
This GP advised me to stop supplementing B6 immediately and also informed me the excess B6 can cause neuropathy.
I stopped supplementing B6 on 6/2014. On 7/2014 B6 was dropped to 140 nmol/l (ref. range 28 - 121 nmol/l).
I guess I made a mistake when I restarted supplementing B6 - now it was P-5-P. My B6 levels rose to 180 nmol/l. I wasn't quite happy and decided to ditch all forms of artificial B6 vitamins no matter what other people told about how safe P-5-P is compared to pyridoxine HCl.
My worst experiences were from 8/2014 and 9/2014. My sleeping was awful. I had terrible nightmares. I had overwhelming anxiety and depression.
I am little bit better now. I have weird buzzing sensations on my feet. Usually I don't have pains. During the nights some parts of my body may become numb (like hands) but the numbness disappears when I wake up and shake those parts of my body.
Unlike most of you I must inject B12 and consume folate daily. (I use methylfolate, I avoid folic acid because it's synthetic like B6 pyridoxine HCl).
The bottom line here is my recovery may differ a little bit from you because I have to take big amounts of B12 and folate every day. I take magnesium citrate 400 mgs per day. I also take some zinc.
However I have very same symptoms. Occasionally weak muscles (not all the time) - especially legs. Those buzzing sensations appeared last week. I freaked out but saw that quite many of you had same symptoms. Dizziness.
I try to exercise every day. Having a walk and/or lifting some light weights.This helps. I guess. Sometimes I really have to motivate myself.
If you decide to speed up methylation using B12 and folate I advise you to eat potassium rich foods (like avocados, bananas, potatoes, ...) because methylation needs and uses potassium and hypokalemia (potassium deficiency) is a dangerous condition (just google it). Unfortunately these potassium rich foods may also be high in natural B6.
If someone is interested I am MTHFR C677T (+/-) and CBS C699T (+/-). +/- is one gene mutation. +/+ is two gene mutations.
I'm new to this forum. 59 y/o used to be healthy male. I suspect you are right B6poisoned about other issues causing b6 toxicity. I have SIBO (small intestinal bacterial overgrowth) which creates enzyme issues, autoimmune symptoms, and possibly b6 absorption problems. Symptoms started in October of 2011 with the leg stiffness you described, burning eyes, restless legs, chills, cold hands and feet (thyroid is okay),cramping, worsening allergy symptoms that included multiple food sensitivities, and sometimes whole body stiffness. I kept a journal and wasn't taking any vitamins or supplements at the time. Legs felt like they were filled with concrete after sitting for a while. Also had 5 months of significant joint pain. Earlier this year I developed pins and needles and burning sensations that progressed from my feet and legs to my hands and arms and eventually to my scalp. Had muscle twitches before but this became much worse and more broadly based. Sometimes my upper extremities would fall asleep randomly. I suspect the worsening of the muscle stiffness and other neuro symptoms coincided with my adding a B complex. Max dose per day of pyridoxine was about 20mg, Dropped the B complex and multivitamin on Sept 4th of this year when my B6 level tested as >100 ug/L. Retested Oct 14 as 24 ug/L, now in the normal range.
After stopping all B6 supplementation I developed additional symptoms that included pains in hands, feet, and wrists. However, pains, burning sensations, and stiffness have since progressively decreased, although I still have bad days. Joint pains in other areas began to decrease before stopping B6 but after I went on a low carb diet, which suggests that gut issues played a role as well. Most annoying symptom now is an odd sensation in my head - sometimes the dizziness many of you describe but also feels like my scalp is too tight or my head has been pressurized. This was intermittent but is now constant over the past 2 weeks. I'm hoping that this is merely one of the many confusing signs that my body is repairing itself. Exercise seems to help with symptoms on a short-term basis. I've heard that it helps reduce b6 in muscle tissue.
I went through this same crap 19 years ago. Lasted almost two years and seemed to be resolved by going on a strict diet, similar to what I am on now. I'm certain that gut issues (SIBO & intestinal permeability) have been a contributing factor. This may be a reflection of my unique metabolic and genetic makeup or it may have broader relevance.
You may be right when you said it is probably gut issues. SIBO & intestinal permeability, I guess that term is also known as leaky gut. I have atrophic gastritis meaning my stomach acid is low or non-existent. SIBO issues are common.
My diet is dairy and gluten free. Also sugar & yeast free.
I also reckon this B6 issue may be something to do with genetic issues. Mulchman said he has one MTHFR gene as I have also.
MTHFR gene defect means the methylation cycle is working slower. Methylation is using i.e. B12, B9 and B6 vitamins. And since the process is slower one can not utilize B6 so easily. (Take a look at http://www.*************************/mthfr/ )
By the way. Does any of you suffer from nausea? I've bee lately nauseous in the mornings. I am wondering if this is related to B6 detox issues or something else. I've been using Ketipinor (quetiapine) with small doses to aid my sleep. I was suffering from insomnia.
Another one to look at is the CMT (Charcot Marie Tooth) spectrum of hereditary nerve problems, and HNPP (Hereditary Neuropathy with Liability to Pressure Palsies), which are closely linked. Some people have no CMT symptoms until a trigger strikes, and the CMT websites say B6 is one of the things CMT patients should not take. I believe B6 toxicity may have triggered CMT in me, the pieces are falling into place. I now suspect a family history of CMT. Regarding HNPP, when I was B6 toxic, my nerves became very sensitive to pressure, a couple of times my right arm became paralysed after lying on it, it only lasted a minute or two but was bizarre and a bit scary. Many symptoms have gone since I stopped B6 but I still have foot pain, muscle aches, muscle twitching, crampy feelings, some nerve pains. Re the head pressure - this has been mentioned on CMT forums - indeed many CMT symptoms seem the same as B6 issues mentioned here. I believe there would be many more B6 toxic people on forums like this if "normal folk" reacted like we have done to B6, I think there must be underlying issues for those who go beyond tingling etc on a smallish dose of B6.
I've had episodes of nausea but have always been able to trace it to one of the supplements I was taking. When you are feeling sick with no answers and are left to self-diagnose, an unfortunate category many of the folks on this forum may fall into, you tend to accumulate a lot of supplements. My supply rivals the Vitamin Shoppe's but ever since testing positive for B6 toxicity, I've put most away. I took N-Acetyl Glucosamine (NAG) and butyrate at a later date but stopped both after identifying them as the cause of nausea and burning in my abdomen. I recently stopped squirting B12 into my mouth to see if it's contributing to my "head" problems. My B12 is on the high end of normal anyway.
The quality of my sleep is poor for the most part, sometimes because of restless legs but sometimes because I simply can't fall asleep. Benadryl helps but can aggravate restless legs, so I asked my doc to prescribe Valium (5mg). I use a half or a quarter dose and do so PRN. Can build up a tolerance if taken regularly and it's not something I want to do on a long term basis. It does work however, makes me a bit drowsy and has a calming effect on my screwed up nervous system (used to treat muscle spasms, cramps, seizures, etc.).
I took a lot of garlic supplements as an antibiotic to combat the SIBO. Garlic is very B6 dense so I dropped that too. Never been able to find out how much B6 is contained in garlic supplements but I'm suspicious.
The CMT idea is an interesting one that I may have to explore. For now, I seem to be making good progress with diet and B6 vigilance and am keeping my fingers crossed.
I also noticed this one: "my nerves became very sensitive to pressure, a couple of times my right arm became paralysed after lying on it".
It used to be worse for me. When I was lying on my back I had weird sensations. But this has improved. It is no longer uncomfortable to lie on my back. I still may have pressure issues with my hands. I guess it is related to how much blood is circulating and since the circulation is slowed when sleeping and if some pressure is also there then you may feel these paralyzed sensations.
Some of these sensations are also similar with B12 deficiency. For instance numbness, tingling. But some of the sensations are quite unique. I have also some "cobweb sensations" on my face like someone from this forum mentioned before. Also buzzing sensations are quite unique.
Nausea may be related to Ketipinor (quetiapine). I halved the dose last night. I did not sleep very well and saw nightmares but I didn't have nausea in the morning.
I tapered down and quit Z med (Zopiclone). My tolerance was so high and I have slept better with small dose of Ketipinor.
Ha, here's one symptom I had while toxic that hasn't been mentioned here - very active cremaster muscles! I remember it distinctly, and told a doctor, which probably made him think I'm nuts, haha. But it was quite pronounced, I suspect due to nerve irritation/damage to the body's temperature control mechanism. I find heat to be a problem now, I get a weird feeling sometimes when the weather warms ... my skin flushes red, and I feel lethargic. But the cremasters have been dead quiet since I stopped B6 :)
We seem to share a lot of symptoms. In your original post, you mentioned a buzzing sensation in your feet and arms becoming numb at night. Have had both of those. When I was at my worst, I had to periodically "wake up" my arms and hands when I was in bed by raising them and shaking them. On a vacation, went to see Godzilla with my kids (college age) and while sitting in the theater my hands and forearms would tingle and then go numb periodically. Real scary then because it was progressing and at the time I had no idea what was causing it. Also have had strange facial sensations and even weirder stuff that I never bothered to share with my doc. All of this seems to be consistent with an irritated and dysfunctional nervous system. I think it has more to do with impaired nerve conduction than circulation but both may be a factor. For me, all of this appears to be due to a combination of B6 toxicity and SIBO. Glad to hear your nausea has decreased.
Yes, the arms going to sleep is scary, I too had to shake them awake. Whether it means we have HNPP issues or it is a symptom of B6 I don't know. I have had plenty of facial sensations and twitches. The thing that bugs me is the exercise intolerance, the muscles ache easily. Thankfully the weakness I have had has been transient. Hopefully it will all go away some day, after seven months off B6 some symptoms are worse, some are better.
I had a period of about two months of episodic weakness in my legs that ended in June. Exercise intolerance has been the most discouraging symptom because prior to 2011 I was an avid biker and was very active. Fatigue wasn't the issue. It was muscle stiffness, muscle aches, and later joint pains and cracking that prevented me from doing the least bit of exercise. It seemed that I merely had to look at something heavy to pull a muscle. The last 12 months have been the worst, to the extent that I had to take a medical leave from one of my two part-time jobs, and only within the last two months have I been able to do yard work. Two months ago is when I went on a more strict diet and dropped the B6 supplements.
For the past two months I've made a concerted effort to increase my activity level, despite how I felt at the time (my long suffering but always supportive wife pushed me), and I believe it's been one of the keys to my improvement. I started out very slowly, with short walks. If I did too much, I paid for it with days of increased aches, pains, and stiffness. I'm now riding a stationary bike and sometimes my road bike for 20 to 30 minute stretches with no ill effects. Also lifting light weights.
Here's why regular, nonstrenuous exercise may helping. There's a lot of research (on rats and humans) to show that exercise speeds up regeneration and repair of peripheral nerves. Given that B6 toxicity damages nerve tissue, hence the muscle weakness, stiffness, numbness, aches, and pins and needles we experience, anything that activates damaged neural circuits is beneficial because it stimulates such repair. It has also been demonstrated that blood serum and urine levels of B6 increase after exercise, indicating that it helps leach B6 from it's storage in muscle tissue,to be filtered by the kidneys but also probably by the liver. Exercise increases circulation as well so more filtering occurs. I drink a lot of water to help with the detox process. I also sip l-glutamine, an amino acid recommended to help mend my intestinal permeability. It also helps with muscle recovery. The key for me was to start very slowly and to not be discouraged by the fact that I might feel worse the next day. If I did, I cut back a little but still tried to do something daily. I also try to get all muscle groups involved (e.g., pumping your arms on a walk) and sometimes I take a hot bath afterward.
If you had any GI issues that predated your B6 problems, such as bloating, lots of gas, cramping, IBS, etc.,consider intestinal permeability and SIBO as a possible contributing factor. I couldn't seem to digest carbs - a plate of spaghetti, pizza, etc. (wheat or rice based) resulted in multiple trips to the bathroom in addition to other symptoms. In my initial post I mentioned going through this 19 years ago. In fact, I've gone through this three other times and every time adopting a very restrictive type of low carb diet made the difference, albeit over a period of many months. Trouble is that the diet is hard to maintain and I always eventually went too far in the other direction, back to a crappy diet and suffered a relapse. My intestinal issues caused peripheral neuropathy symptoms before, without the help of B6. The difference this time is that I made things a lot worse by supplementing with B6.
I have also tried to be physically active. My legs are also the worst. Little bit over a year ago I was lifting weights and hiking in the woods. The first signs of symptoms were already there. I tried to work out even more vigorously.
At some point fatigue and weakness were overwhelming and I stopped exercising. Approximately a year ago.
I started exercising 6 months ago. I was pretty weak. I started with dumbbells and had short walks. Results are little bit better now and I can walk longer.
I can't go to too strict diet. I need some carbs. However like I said before I am on gluten free, dairy free, yeast free and sugar free diet. I am trying to eat organic food. In this country foods are not typically fortified.
Those are good points - to exercise and to drink water regularly.
Yesterday was a good day but this morning my legs are weak.
Your diet is similar to mine. I've been gluten, dairy, sugar, and yeast free for years. Occasionally have tested my diet by eating cheese but wasn't worth it. Makes eating out and traveling a challenge doesn't it? I've lost so much weight over the past year because of being progressively more restrictive with my diet, out of fear that certain foods were exacerbating my symptoms. That culminated in what was to be a 6 day water fast, for the purpose of positively identifying food sensitivities as a cause, but my joint pains became so excruciating at day 5 that I had to stop. Not at all what I expected. Turns out that fasting also causes B6 to be released from muscle tissue, but I have no idea if that was the reason for what happened. I'm now on what's called the Fast Tract Diet developed by Norman Robillard and it seems to be helping, but it's early still and too soon to declare it a success or to recommend it to others. Exercise and the fact that this diet is a little more liberal have allowed me to put on a few pounds of muscle mass but I could use 20 more.
Some days I'm positively giddy about how good I feel but days like yesterday bring me back down to earth. Legs felt stiff and had stiffness and mild pains in my hands and feet. Waxed and waned throughout the day. Similar to your circumstances,my legs have always been the major problem. Keep reminding myself to keep my sights on the big picture. Hope your day improves.
I think we still need B6 from natural food sources although food may aggravate the symptoms temporarily. If you are fasting (especially water fasting) only B6 in your body will be the stored and since we are storing that inactive synthetic pyridoxine this may lead to unwanted results - releasing it too fast. Of course this is just speculation but then again there's no one here expert on this field who can tell us what is the correct way to deal with this condition.
I haven't actually traveled since I started this diet 6 months ago. My fiance is also on same diet. We have dairy allergies and we are sensitive to gluten.
To be honest I hate this B6 thing because some of the symptoms are similar to B12 deficiency. All I can do is inject B12 frequently enough and have enough folic acid (methylfolate). And hope that I am getting enough.
I have also lost a lot of weight. Probably 15 kgs (30 lbs) in a year.
My day improved. My mornings are the worst. I also try to look at the big picture - I am better than 6 months ago and hopefully recovering.
I think you are right about the joint pains when fasting and synthetic B6. If it had anything to do with B6 at all, it must have been the synthetic pyridoxine, otherwise everyone who did a water fast would be leaching natural B6 and have the same experience as me. I did the water fast to rule out food intolerances and because there is good evidence that it produces a remission of symptoms for people with rheumatoid arthritis. My result was the opposite.
I also obtained results totally counter to what I expected when I got my B vitamin levels tested. I sympathize with your plight regarding them. While researching causes of my advancing peripheral neuropathy, I found out that many people with SIBO suffer from nerve issues because of low B12, due to poor absorption. Got excited because some the the symptoms were consistent with mine and also discovered that B6 deficiency can be a cause as well. At the time I was taking a multivitamin and a B complex inconsistently but immediately drove out to buy a more potent B complex. Felt worse for weeks after doing so, didn't relate it to too much B6 at the time, and finally decided to have my blood levels tested (fasting), fully expecting that both B12 and B6 would be low and I would finally have an answer. Was thinking that maybe I needed a higher dose and was shocked when both were above normal. Thank goodness I didn't wait longer to get the labs done.
You may not have any nutrient deficiencies. That can be a dangerous assumption to make. If you haven't dome so already, consult with your doc about your symptoms and ask him/her to check your vitamin B levels. I have joint pains too and it's unclear whether high B6 can cause them but who knows - research is minimal and it seems that B6 toxicity can cause a variety of problems. In any case, work with your doc and stay off the B6 until you know what your blood levels are. In the interim, I would also make sure you aren't getting B6 from other artificial sources (e.g., fortified cereals, added ingredients in other supplements, multivitamin, etc.) until you know where you are at. Good luck.
One other thing. Your B6 levels may be in the normal range if you have it checked a while after you stopped. However, you still could be B6 toxic. I would stay away from B6 supplementation in any case.
Please answer me this B6ers ... if you hold your hands together in front of your face, so the back of one hand is facing your face and the other is facing away from you, and you push the hands together very hard using your arms, do your arms start shaking?
Doesn't happen with my arms but perhaps this is analogous: When I stand up straight after getting out of bed in the morning, my whole body shudders when I tense my quads. Quads also quiver when I straighten my legs in bed after sleeping curled up on my side for a while. Was so bad that it would wake up my wife. Diminished significantly in intensity since I stopped the B6.
No news - I get all sorts of weird pains, including back aches, I know it is related to the nerve condition as evidenced by all the muscle twitching, but I wonder if B6 toxicity has triggered something else, eg possible underlying Charcot Marie Tooth disease, as mentioned earlier. Some of my symptoms have improved, others not. Keep hope in that others here have said recovery is very slow. Better to get better slowly than not at all. I am nine months after stopping B6.
Up and down for the past week. Lower extremities have been the biggest problem with muscle aches and stiffness in legs and a hard to describe dull ache in feet. Feels like they should be swollen but they are not. Today was better. Looking back in my journal, I realized that its been only about two months since I have had normal B6 levels, so I'm presuming I have a long way to go. I had a really bad back ache which lasted for days after a 4 day water fast and now experience less severe back problems on days when other symptoms seem to be back in force (e.g, muscle twitching, cramps,body aches, joint pains). Not sure if it's all B6 or gut issues - probably a combination of the two. I also have weird delayed allergy symptoms which make it all very complicated. I'm not nearly as bad as I was throughout the spring and summer though. Thankful for that.
It seems like I have something common with you two.
Weird pains. Yes, Not constantly but sometimes.
And this one: > Dull ache in feet. Feels like they should be swollen but they are not. < I have experienced that as well. I was wondering if my feet were swollen but they are not. They just feel like swollen. That sensation is not that strong any more or I am just used to it.
I have an appointment with allergy specialist. They are doing so called prick tests on Friday. My GP wanted to me to take these tests. He discovered my dairy allergy (as well as B6 toxicity). So I have been off B6 and on non-dairy diet for 4 months now.
I am mentally much better than two months ago and I sleep better now.
I had a liver function test recently and it showed raised ALT, this has also shown up on previous tests. I am overweight and have in the past been diagnosed with diffuse fatty liver, even though I hardly drink alcohol. This may explain why B6 hit me, it wasn't being processed quickly. Possibly the same for the statin drug which knocked me around before the B6 trouble. I have also been diagnosed with low testosterone, although happily still passing all "prick tests" :)
Clearly I need to lose weight and get the liver sorted out. It will assist in recovery. I suggest others have a look at their ALT results. You don't have to be an alcoholic to have liver trouble, a western diet can cause problems. I started eating a higher fat diet because I read it might assist nerve recovery, in my case this may have been a mistake.
No more cream dollop in the black coffee :(
Muscles twitched like crazy last night, today hardly a twitch. Going to try acetyl-l-cysteine and thiamine to help the liver. I get the weird muscle aches often, and the odd foot sensations mentioned.
I used to be a weight-lifter and liked a bit of hard work, went from that to getting back cramps from just wiping my butt, all thanks to B6 ... life is funny.
I could use a few of your pounds B6 poisoned. Finally managed to gain a few back after dropping to 152 (69 kg). I'm still a stick man at 6 feet 1 inch (185 cm). Sadly, my diet hasn't been Western for quite some time - no dairy, sugar, wheat for years and very low carb/no grains for past three months due to gut issues. I dream about pepperoni pizzas.
Thankfully, my liver tests have been normal. Abnormal labs have been inflammation markers - high C reactive protein and elevated cpp antibodies. Don't think that high B6 causes systemic inflammation, which leads me to believe that leaky gut and associated allergens are my primary problem. Labs have come down since July, when I was at my worst and ready to jump off a bridge.
SirRoderiq, your GP sounds like a keeper. The allergy angle is an interesting one. I tested positive for wheat, dairy, dust, and mold. I started supplementing B6 because it reportedly helps dampen the production of histamine, the chemical responsible for allergic reactions, which when delayed can sometimes include joint pain and muscle aches. Obviously, supplementing was a big mistake. However, I'm pretty sure that allergies, exacerbated by my leaky gut issues, play a major role in my difficulties. Even airborne allergens, if the exposure is chronic, can create systemic problems in sensitive people. A lot of allergists aren't open to this idea but it's well documented regarding toxic mold exposure and I'm beginning to believe dust mite exposure contributes to my joint pains and muscle aches. I'm in the process of giving this theory a real test (I'm wearing a dust mask as I write this :) Life is indeed funny.
My weight is about 77 kg (170 lbs) at the moment. I used to weigh more - 100+ kg (220+ lbs). I used to have long walks and lifted weights. My height is 182 cm (approximately 6 feet).
I had some tests done couple of months ago. Liver tests - ASAT, ALAT, C creative protein were all OK. This younger GP wanted to test a lot of things. All tests were normal except eosinophils were slightly elevated.
I think it is not all bad now when my weight has dropped.
My diet has also changed. I have reduced the amount of carbs however I am not avoiding them. But since I am on dairy free, gluten free and sugar free diet this has affected a lot. It's not the fat it's western high carb diet which is killing us.
Since I have so many food allergies I may have also leaky gut problem. They say these two things may be related.
My (regular) GP is a little bit older guy. Probably 70 or more. Still working. He seems to know a lot about these vitamin B related issues.
Hope you are both continuing to do better. Just a brief update. I seem to be nearing the point where I was prior to supplementing with B6. Hand neuropathy symptoms are nearly gone and I no longer have pins and needles sensations in my legs and arms, although I still have muscle twitches and cramping (less frequent). I am now left with the rest - burning eyes, swollen, achy feeling in lower legs and feet, ringing in my ears, occasional mild joint pain, muscle stiffness, etc. Some days are much better than others and can be nearly symptom free. Still on diet, doing some exercise, and waiting for the rest of my symptoms to resolve, a goal that I may never reach but at least hope to approach. Recently gave up coffee because of the possibility that it was irritating my GI tract and contributing to intestinal permeability. That really *****. Look forward to having a cup with my wife when I come home from work, especially as the days get colder. Always tell myself that it could be worse. It was a lot worse five months ago.
Neuropathy symptoms have decreased. Especially numbness. I realized I have not woken up lately with hands or legs numb in the night. Same thing with pins & needles.
I have some occasional muscle twitches, swollen feeling in lower legs and feet. Ringing in my ears - tinnitus. Some mild joint or muscle pain, muscle stiffness, etc. Just like you said.
I think most annoying symptom at the moment (if it's b6 related) is dull ache on my lower back/bottom if I have to sit still longer time. If I stand, walk or lie down pain doesn't bother me, actually pain disappears.
Other symptoms have disappeared or reduced but pain has increased. The pain is tolerable.
I have had flu for several days now. Even more pain and discomfort now.
I sometimes have a dull ache in my lower and occasionally mid back as well. At such times I feel I could easily pull a muscle. The question for me, and I guess for the both of us, is to what degree is this B6 toxicity vs GI/dietary issues? My diet is pretty high on B6 dense foods. Eat a lot of chicken breast, salmon, etc. and other meat protein because of my low carb, no grains diet I've felt all along that the B6 in foods are not a factor but I could be wrong. Other people on this forum have claimed to have worsening symptoms in response to food. Will address this for the next few weeks and see what happens.
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