yes, I think I know what you are talking about. Unfortunately I have it as well, after B6 toxicity. I have been diagnosed with Migrainous Vertigo (or vestibular migraine, or migraine associated vertigo... it has many names). I didn't have it until a few months after B6 toxicity. Basically, something gets messed up and you start getting migraines. Except that these migraines are atypical. You don't even need to have a headache. One can feel head pressure, buzzing, pressure on the face and behind the eyes PLUS vertigo symptoms such as falling sensation, spinning vertigo, feeling like you are walking on a boat, the ground is bouncing, that you are floating, etc... Some people have only the vertigo/false sense of motion symptoms without the head symptoms. Go to see a migraine specialist and tell them you think you have Migraine Associated Vertigo. read this link:
Hi Anna, I am just over a year into this b6 toxicity and my symptoms are very similar. I still have the burning and pins and needles mostly in my hands and feet and i still have that off balance sensation in my head although not nearly as bad as previous. I have gained alot of my energy back and my legs are not nearly as stiff and weak, so there are signs of improvement. I still get some bad days where all the symptoms come back to visit. Here's hoping we all feel noticeably better soon.
Just a report as I approach a year off B6 after being blood-tested toxic. Some symptoms are better, the most worrying being when I pointed my feet downward and inward they would lock up, this seems to have gone away. However my muscles still twitch all over and I get assorted nerve pains and muscle aches, mostly in lower legs, but more recently strong pain in lower thumb. I believe I have underlying CMT so some things may never get better, but there's been a lot less cramping. What improvement there has been was slow to come, as reported by others, hopefully there is more improvement on the way. I have some muscle atrophy (shin and forearm), but hopefully that is the CMT. I am still strong enough to change a tyre on my 4X4 vehicle. Some CMT patients plateau and I am hoping that's what will happen now the "poison" is gone :)
I have had really bad issues with walking, now requiring a can, for about a year. Diagnosed with Spinal Stenosis. It's gotten so bad that I started doing research. I have been doing 5-day energy shots daily for 6 months now - about 40mg of B6 per day (was doing emergen-c's before that). I'm thinking my walking, tingling may indeed be B6 toxicity and am going for a blood test this afternoon. I've gotten a lot of good information from this group - thank you.
I've been dealing with it for 15 d*** years! Until I finally fired the doctors about a years ago. Didn't find it was B6 until 2 months ago. I was coerced into gastric bypass surgery in 1999. Doctors were supposed to do blood tests every six months or so. They drew blood. Didn't do the tests! At one point I was taking a cyanocobolomin shot every two weeks for several years - then went on high potency B complex for 3-4 years. All they wanted to do was drug me instead of doing the tests!! I finally got a doctor to do the tests and she didn't catch it. My pharmacist went over the results with me - he caught it. B1, B6, & B12 all at least 3 times what he said was toxic levels. Stopped all supplements. B1 & B12 came right down. B6 level >100 (he said 20-25 was toxic) - not idea how high (>500?). Every symptom imaginable! Too miserable to keep writing - be back later.
I have read a lot of the posts on this forum and I have had most of these symptoms many have mentioned. I stopped the multivitamin I was on 1 year ago, but I still have these miserable symptoms pop up from time to time now. Better, but still lingering. Food has been triggering symptoms lately. So, I was just curious if anyone on this forum was iron deficient (anemic) before they started on any b supplements or vitamins in general? This is what started me on vitamins in the first place. I am wondering if there is a correlation between iron deficiency and getting toxic levels of b6 in our systems. I just got got diagnosed as iron deficient again when these old b6 symptoms started back up. I am still trying to make sense of this dreaded condition we are all going through. Hang in there all.
I suffered from b6 toxicity 2 years ago now. I am happy to say that I feel much better, but that is not saying it doesn't come back from time to time just not as bad or as long. When I first found out that my b6 levels were high, I was relieved and scared at the same time. I immediately got off of the vitamin I was taking, but what to do now. Doctors have no clue and told me to take more vitamins. Yeah...no. Basically, I started watching my diet and tried not to eat anything "high" in b6, because basically everything seems to have it. Goggle the top foods and then stay away from them. I drank a lot of water and tried to exercise as much as possible, even if that meant sitting on an exercise bike "trying" to pedal for 10 minutues. I took zyrtec for the skin redness that would happen after I ate anything. That seemed to help after a while. Since this whole b6 toxicity thing seems to point to low magnesium levels, I started taking epsom salt baths, because I was scared to take any supplements at this point. Epson salt is actually magnesium sulfate and helps you detox as well as add a little bit of magnesium to your body. This seemed to help some, but make sure the water is not too warm because it will irritated the skin of those suffering from skin redness. Anyway, don't take these epson salt baths if pregnant or have diabetes, that's what the label says. Research before you go this route. Hope these ideas can help someone, because I know how I felt 2 years ago. If you are now off of your b supplements, you took the first step in this recovery process.
The above post was a response I found on another site to someone asking questions about b6 recovery. Sorry as I meant to put this in the beginning of my post above and then decided to put it at the end and never did. Hoping some could use this info....
Thanks for posting. To Meredith, I had trouble walking when I was B6 toxic. Legs felt like rubber. That has gone now, my main issues are pains in muscles and twitching, with a little atrophy in a shin and forearm which I attribute to CMT. Still get occasional cramps, but nothing like before. I can also now sleep all night without having to pee multiple times, which is hugely helpful and makes me feel that I must be improving, albeit slowly.
To add to my last post, It's been a week since I took my last B6. Today, I swear I'm walking a little better. I am tingling a LOT (arms and legs) and getting some chills. I've read so much on this thread and am REALLY amazed at how much this affects all of you.
My neurologist doesn't think 41 is high enough to blame my walking issues on B6. I don't think they ever asked whether I have had tingling (I have had this for the past year). I'm wondering if he's just not familiar with B6 toxicity.
I'm going to continue to watch this thread - I'm so glad to find a place to share this issue.
HI, I'm writing you because you seem very knowledgeable and thought maybe you could help me. It has been 2 and a half weeks since I stopped all my B6 supplements, my level was 189.2 (2-21.2 norrnal). I have been suffering for 6 months, seen several specialists, been through several tests, MRI's, EMG/NCV, blood tests and so on. No one did a B6 level, so I began to do some research and found out that B6 toxicity could be causing my tingling extremities, nerve tickling, muscle twitching symptoms. I then requested that my physician draw the level and it came back toxic. I was wondering how long it takes to see some change, if even for an hour or so. I'm currently going to acupuncture weekly in hopes to get some relief.
I just got back from seeing an orthopedic doctor. I have had problems walking for the past year. I so have some level of spinal stenosis (turns out the MRI was of poor quality so I have to have another one done... long story)... I'm not in any pain whatsoever.
I told him my B6 levels showed up very high in recent bloodwork. He had NO interest in discussing it. Said that B6 is totally water soluble and doesn't stay in your body. Said that my symptoms would be more a result of a B6 deficiency, not too much. He COMPLETELY blew it off. Anyone else experienced this with doctors?
Meanwhile, after two weeks of no B6 I still have the tingling and walking issues but am pursuing the MRI if insurance will cover it.
The potential for B6 damage does not seem well understood by some doctors. You can read through the five pages here to see that. There are some medical papers out there that recognise B6 is a problem for some people, but there is surprisingly little literature given that B6 megadoses are common in supplements, and yet it is a known neurotoxin.
Clearly, those people with a metabolic problem or hereditary nerve weakness (or both) are going to react worse to B6.
The fact it can affect walking is well known and I am surprised any doctor would deny this. When I was toxic my legs were heavy and weak. I had to pull myself up the last few stairs boarding a jet. Scary stuff!
Unfortunately everyone says recovery is slow. For some who have hereditary nerve problems, there may be only partial recovery. Or it might even get worse because nerves can fail in a cascade.
For others, full recovery! It will depend on the individual body.
It took weeks for my symptoms to ease after chucking the pills, and I still have nerve twitching and muscle and joint aches after about a year. My legs are stronger but I know my hiking days are over. I am 50. Given that I spent many months thinking I had ALS, any other outcome now is a good one!
I got weakness in a shin muscle more than a decade ago which I now realise was a nerve problem. Clearly my nerves are susceptible to any potential toxin. I also had trouble with Lipitor. I believe others here are probably in the same boat. I suspect that if "normal" people were vulnerable to B6 there would be thousands on this forum complaining!
"The fact it can affect walking is well known and I am surprised any doctor would deny this. When I was toxic my legs were heavy and weak. I had to pull myself up the last few stairs boarding a jet. Scary stuff!"
Yes - Exactly! My legs feel like sandbags. I will say that in the past two weeks (hopefully as a result of stopping the B6), I feel much more grounded. It is a hard thing to explain to anyone.
I've also noiticed, as recently as this morning, how many products have B6 in them. I am reading every label now.
Thanks for your response, B6poisoned. This group is a wonderful resource for all of us!
Hi, I am male 22 year old. Experiencing burning and tingling in my hands, forearms, feet and in a small around around my lips and jaw. I did have a head aches with similar symptoms but that has almost completely gone away. I was taking vitamin b supplements without consulting a doctor for about 3 1/2 weeks. Up to 36 mg of vitamin b6 and 140 mg of vitamin b3. I stopped taking these 5 days ago. I visited the E.R and they said the excess vitamins would be removed through urine. I am wondering if these symptoms are temporary or if i have possibly caused permanent damage to myself?
I don't know anything about b3, but that doesn't sound like enough b6 to cause poisoning/toxicity. 3.5 weeks and 36 mg can't possiblyresult in permanent damage, can it? I'm anxious to hear other responses -
I hope not, I was taking 36 mg daily. I've been feeling better since I stopped last week, Ive had a minor headache come and go and some tingling at times and finger twitching once that really surprised me. Thanks for the reply.
A neurologist prescribed me to take vitamin B6 supplement (100Mg). I've been also taking a multivitamin that also contained 50Mg of B6. In total I've been taking ~150Mg of B6 for about half a year, on and off. When I checked my B6 blood level in half a year, it was about 400 nmol/L (with reference range of 20.0 to 125.0). During that time I developed the following symptoms:
* Muscle twitches all over. Every night in bed when I turned from one side to another I would most often get some muscle twitches as a result of turning. But, muscles would twitch even without any muscles movement. Twitches in legs, arms, bottom, back, stomach, head.
* Occasionally I would wake up with a numb arm or fingers. Sometimes one arm, sometimes both.
* When I yawned, my body would shake
* Pulsating stomach, which I felt the most in bed
* Occasional shortness of breath
* Few times muscle spasms in foot - quite painful
* Sometimes my hands would shake a little
* Occasionally, my fingers would twitch on their own
* I noticed that my right eye is closing slower then my left eye
After the blood test that showed that my B6 level was too high, I stopped taking vitamins. It has been about 3 months since I stopped taking the supplements.
My symptoms have improved since then:
* Still have muscle twitches, but less frequent. The twitches varied in frequency before, but I would say that every hour I would notice something twitching. Now, I can go for hours without twitching, but I still notice it several times a day.
* Recently I have a feeling that I don't sense the presence of my arms as well as "normal" when I lay in bed. My arms become tense, loose some feeling, but don't become numb.
Nowadays my symptoms sometimes are bad enough that I want to go and check for other nerve disorders (MS, ALS, Parkinsons etc). On another hand I can go half a day mostly forgetting about any symptoms. As a rule of some, in bed the symptoms become much worse and are better in the morning.
Some background: I have Hashimoto's disease (thyroid disorder) and related to it food digestion issues, including gluten intolerance. Due to food digestion issues I had headaches, the doctor did an MRI which was normal. The vitamins were very low, which is why I started taking the vitamins.
I am sorry you are not well. All that you are experiencing can easily fall under B6 toxicity. I've experienced most of your sx and many more.
To put your mind to ease, you might want to rule out ALS and get checked for Parkinson's. It'll give you peace of mind along the long and slow road to recovery from B6 toxicity. Trust me, you'll need it :)
BTW, I am not a medical professional, but some of your sx might stem from the thyroid issue - not that I know much about it but when I was trying to find out what was wrong with me and reading up on these things, I remember coming across thyroid disorders as potential causes of some of those sx.
I have twitching all over, sometimes in new places, after a year off B6. I am starting to think it is permanent, possibly because I may have Charcot Marie Tooth disease, which the B6 could have triggered. But people have reported on here twitching for years after B6 toxicity. I also had the numb arm thing and shortness of breath. As for the person who was on B6 a short time, others have had symptoms after taking small doses and short term doses. Most get better. More recently I am getting heart palpitations at rest, feels like my heart is slow. Don't know if it is B6 damage related, but I do know my doctor is looking at me funny, there's been too much weird stuff going on for too long, and I don't have anything to show I am sick - at least with a visible tumor people know you aren't well!
It's been almost 2 years since I took just 50mg for a little over 2 weeks...it changed my life forever...it has been a nightmare of one thing after another. I have made almost a full recover from the pain and nerve twitching but am left with tinnitus in my left ear and now hyperacusis with throbbing (no pain) in my head with loud sounds or eye movements. Recently had an MRI, MRA again all was clear. Going to have a VEMP test at the ENT on Tuesday but honestly I think B6 just messed up my whole nerves system and I will never be the same..Dont get me wrong I am blessed to have came this far! it was sooo much worse, if I could get rid of this sound sensitivity that started last July and my sensations in my head I would have it beat....I am eating what I want now, fortified cereals ect..without any pins and needles but do not take any supplements!! its ironic this head thing started after I was told to take 4000IU of D a day.....I went to see an eye Dr and he said stop that high doses of vitamins gave him BPPV, so I did in hopes again it was a vitamin...it still may be just taking time to clear....WE DONT need to supplement JUST EAT right...I will never take another supplemental as long as I live, my D is low right now but probably always has been in the winter just never had it tested like I do now...don't give up, try to remember it gets better with time...I keep hoping one day it will all go away :) God Bless you all ....J
Vitamin D is a tough one, we live inside too much and in the high latitudes people are more prone to getting MS, they think perhaps because of low Vitamin D.
They seem to be finding a few problems associated with low Vit D.
But yes, the ramifications of taking supplements are poorly understood and there may be all sorts of unintended consequences.
Hard to know what course to follow.
Sorry to hear of your issues jacqles, and good of you to post again, it adds again to the knowledge pool in this bizarre B6 business.
A year or two before I became B6 toxic from excess supplements I was taking Blackmores Mega B pills alone and I got vertigo at one stage, I also had a weird thing where if I coughed hard I almost fainted. I felt very odd at the time and wonder if it was the 50mg of B6 causing it way back then. Later, when I was B6 toxic sometimes I would get drumming in my ear when I spoke!
For those of you who've said that b6 toxicity gets worse before it gets better, can you please elaborate? I experienced the pins and needles, numbness, problems with gait, et cetera, after taking supplements that included pyridoxine for maybe 10 days about a year ago. Symptoms have slowly improved, but lately those areas that were most numb early on seem to be waking up. It can be quite uncomfortable, with those areas really burning at times. Does that sound familiar to any of you?
I am not sure if you still check this board but I do have methylation issues (MTHFR C677T Homozygous) and ran into trouble with b6 toxicity after taking a supplement for a couple of weeks before I knew of my MTFHR status last year. I think that I've slowly been healing but am experiencing what I can only describe as burning in areas that were last year pretty much numb after ingestion of the b6. Does this resonate with you at all in terms of things getting worse before they get better? Just wondering ...
yes, I have found that the recovery is NOT a linear process. For no obvious reason, some days are better than others, some weeks are better than others, etc... then, boom, back to what seems to be the beginning. Hang in there - you are still very early on in the recovery :)
Almost a year after i quit taking b-6 the tingling, burning hands and feet and insmonia, fatigue, twitching, balance isues etc. finally started to clear. I was eager to get back to working out. I did 4 moderate work outs over 2 weeks and all the symptoms came back strong. It seems to me that it cycles regularly, good days bad days good weeks bad weeks etc. You have to look at this long term as long as youre progressing you are doing ok.
Thanks for your post! It is now in my 9th week of being off my supplements. I had my level retested 2 weeks ago and it is now normal. It seems that since then my symptoms have gotten a little worse. Not sure if it is the heavy exercise I'm doing and it is drawing the vitamin B6 out of the muscles???? the muscle twitching is the most annoying. The tingling is tolerable, and the burning hands and feet are occasional. How long does the annoying twitching last? Does your twitching sometimes cause your arms or legs to jump? I feel like I may be starting a cycle of better days, but we shall see...... It is hard to see if I'm progressing as I go from good to bad, which makes me forget about the good days and focus on the bad days...... is that how you felt??? Am I asking too much since it has only been 9 weeks???? Thanks for your insight!!!!
It has been 8 weeks for me. The tingling is subsiding. I know it's going to be a while, but I think things are turning around. Still have walking issues but am seeing a surgeon tomorrow to confirm that it is spinal stenosis causing it - not necessarily going to get surgery, but do want his opinion.
Hi everyone just wondering is fatuige a main issue for everyone and brain fog? I never had any problems with my energy levels untill the b complex overdose.Its been 2 years from i stoped my vitimin and still have systoms i only took b6 for one month it really does cause lot neurologal damage just hope it is all reversible
I finally found this thread again (will have to remember to book mark it). No way I can read the whole thing. But, like many of the posters on the first page of messages - I was on a low dose b6 under doctor recommendation (taking folic acid, b12, b6 for high homocysteine levels) and within three months started to have issues with nueropathy, blurred vision, dizzy spells, within a year I wasn't able to walk for a whole three months due to severe dizziness; severe fatigue, brain fog, you name it - I had it. You could go down the entire list of symptoms and I could check them off one at a time without missing a beat.
I saw dozens of specialists including being tested at University of Iowa Hospitals and Clincs and Mayo Clinic in Rochester and no one found anything. Multiple suggestions I needed psychiatric care. About 18 months in my mother got tested and found out she had b6 toxicity and suggested I should get tested as well. It took three years of badgering, then finally insulting the doctors before they would agree to test me (after all, low dose b6 shouldn't cause an issue). I don't have a copy of my test any longer, but I'm thinking it was 91 on a scale that said 23 was normal and 40's was toxic.
When the doctors told me that I tested positive for it, I asked them what was next and got a ton of shrugs. I later found out I have several MTHFR genetic defects and had recurrently had issues with low b12... and that I could tolerate the normal over-the-counter dose of folic acid either. My serum levels dropped pretty quickly once I stopped taking it, but the symptoms remained. I didn't get told 3 years would give any indication, I was basically left on my own. I started following a treatment plan that started with Ben Lynch's site - mthfr.net; to treat my continued fatigue and health issues and one of the treatments besides taking methylcobalamin (b12) and methylfolate, p5p AND epsom salt baths seemed to really turn around the nueropathy. I'm still ill, mind you... but have had periods of remission that seem to reflect that I'm on a good start - and that following methylation and detox might be part of what I need.
What I don't know now and don't know how to figure out - is with the symptoms that remain that seem to be part of the list from b6 toxicity and NEW symptoms that seem unrelated to b6 toxicity - is what I have now something new? A mixture of the two? I've been off of b6 supplements for five years now (well, besides the occasional p5p which I seem to tolerate)... and the nueropathy is gone. But the dizziness (low blood pressure being treated with salt intake increase) heart palpitations (taking potassium), chronic pain (epsom salt baths, muscle relaxants), fatigue (taking methylation related supplements), history of blood clots (clotting disorder); and muscle weakness, weird lumps under my skin, frequent spontaneous rib dislocations... I'm at a loss as to what else is going on as it doesn't feel like it's still 'just' b6 toxicity.
This B6 thing seems to throw the body out of whack and could unmask any existing problems, exacerbating existing diseases that might have been previously symptomless.
A lot here say symptoms are worse when ill. I can tell when I am coming down with a cold etc because the twitching picks up a day before the runny nose starts. This might suggest an auto-immune thing that follows B6 toxicity.
Most of my symptoms have eased after a year+ off the pills, yet the twitching seems to be spreading around, but there are times it almost goes away and I feel "cured".
A lot of body aches have gone but my fingers/hands still ache when I pick up heavy things - anyone else get sore fingers and thumbs?
Hi everyone how does exersise effect you before b6 toxicty i felt great after but now i feel drained it makes my systoms worse more fatuige brain fog.How did ur energy improve? I find im fine with foods high in b6 im veg juicing and take omega fish oils help any advise would be great. thanks
could you please describe your dizziness to me? Is it the feeling that you get when you get up too quickly from sitting, let's say, or is it more like the ground is moving or the surroundings are spinning?
My dizziness was the entire world was spinning and heaving like a tiny raft at sea that was spinning while riding waves... along with a sense of falling. My eyes and balance were lying to me and I'd feel like the only way to stay upright was to counter balance (which would land me on the floor).
Only my sense of touch would help. I'd experience the sensation unless I was flat on my back. I'd still be experiencing it if I was upright - but if I could touch a wheelchair, or hand on a wall, or a person's shoulder I could 'feel' the disconnect and the falling sensation would back off.
I was never so relieved to have the worse of that pass. It came on gradually, a few dizzy spells a day to a few an hour - until it was 24 hours a day for a period of 3 months during which I was bedridden. Suddenly, with no real explanation - it dropped back to being dizzy sells a few an hour again, and to this day I still have a few dizzy spells a day here and there, although now they think it's from low blood pressure.
I am really so sorry you went through that. Thank you for taking the time to explain it.
I had never had dizziness issues until this B6 toxicity messed me up in so many ways. I have the sensation of either the floor rocking/bouncing or me being on a boat. They dx'ed me with "migraine associated vertigo" - a migraine variant (don't need to have a headache with it ) and put me on preventive meds for it. I know B6 did it to me but I wonder if the mechanism is thru migraine (which is what I and the drs think) or through something else since yours sound different. Did you have head fullness, brain fog, sensitivity to light (especially computers and fluorescent) with it?
I did (to some degree) - sadly some of those other nuerological symptoms remain even though the dizziness is mostly gone. I, too, had one nuerologist claim it was migraine aura. I've had less than a handful of migraines in my life, never with an aura and I was having these spells that became 24x7 and yet, still no migraine pain ever. The explanation I got was that you don't have to have pain. But the other ten nuerologists I saw after that explained that eventually I would get a headache... but I never did. But they didn't agree with the diagnosis.
They didn't have a replacement diagnosis, but all of this was before they discovered my b6 toxicity.
I do have headaches with them (though not what I would have though were migraine-type, but definitely daily headaches).
Going back to your question in your original post in your last paragraph: re: new sx such as ribs dislocating, clotting disorders, etc.. I didn't get any of those, nor do I remember others mentioning them in the posts I read here (and I read every single post 4 - 5 times if not more over and over again). I didn't come across them in my months of research on the topic either. So I would think you have other issues going on (whether caused by B6 or not) that might have a name of their own as a condition(s), so to say.
Also, be careful with the other supplements you are taking. I had read cautions against supplementing with Potassium, for example. But your doctor would know better. I hope you get better.
Hello i have been recovery from b6 toxity for 2 years had lot brain fog fatuge issues some days ate better than others worse with caffiene etc.I noticed u said about potassium ive had terrible reaction to anything with potassium in it even small amounts cause tingling burning not sure why im ok with food tho.
I have terrible issues with magnesium; potassium is going ok but it is with doctor overview and my potassium has been testing low. I've suffered chronic diahrrea with the intestinal issues and it has thrown off my electrolytes. Salt and potassium has helped - magnesium I don't tolerate - but maybe I'm getting enough of them through my epsom salt baths? I've finally (I think) gotten a handle on all my new food intollerances so I am hoping that if I can get the gastric issues under control that I could possibly drop the salt and potassium.
I'm not completely sure. I was taking it because I had high homocysteine levels which weren't tested until I was diagnosed with bilateral massive pulmonary embolism. I felt like I was recovering well from that for the first three months, but right around the three month mark is when I started to get worse. Within 9 months I was bed ridden from the dizziness. I was flat on my back for about three months and started to recover from that. It was about three years later that I finally got tested for the b6 toxicity and found positive for it. It was another six years of pretty severe symptoms after stopping taking b6 before I found out about epsom salt baths and methylfolate and other ways to boost the methylation process and started to get some relief. Not all my symptoms are gone - and as I've mentioned, a few seem related to possibly something else altogether (so I have a lot more to figure out). But the dizziness/vertigo is down to rare and occasional; the pins/needles/temperature issues are gone and my balance is improved by a great deal.
I did have the worst fatigue - just crushing (sadly, I still have the fatigue to some degree now - but my supplements have helped a great deal).
I don't really remember ringing in the ears, though I have noticed some slight hearing loss (no idea if it's tied to anything other than getting older/listening to loud rock music when I was a teen or something else altogether). It seems to be certain tones or in certain situations.
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