My story begins in 2012-ish with weight loss. I started drinking water flavor drops, 0 calorie sparkling water, and electrolyte drinks while experimenting with fasting. I assumed that I would pee out any excess vitamins. Some of the drink flavors had very large doses of B vitamins. I also tried various supplements over the years, some multivitamins that had B6, and some magnesium that had B6. I began lifting weights to build muscle and improve my metabolism, so lots of chicken, lean beef, and lean pork providing b6 naturally.
My first symptom was maybe 2015-2016ish with fidgeting while watching TV at night. After a several months, I realized it was because my feet were warm, so I would get up and rinse them off in cool water or I would lower my entire body temperature by removing blankets or clothes, until my feet cooled down too. After probably a year of that, my feet started getting much more noticeably hot and red, only at night, usually after dinner. But fairly infrequent.
During 2017-2019 I also got a professional certification, planned my wedding, planned my honeymoon. I developed severe IBS, a colonoscopy diagnosed me with autoimmune lymphocytic colitis. I finally controlled that by removing dairy. So money and time constraints kept me from pursuing the feet symptoms. As feet flares became more often, I asked all my friends, I asked two primary doctors, and two gynocologists. None of them had any idea what would cause feet flushing. It was not painful, just uncomfortable, so the doctors said it was nothing to worry about. I did have my routine physical exams, routine bloodwork, and routine well woman exams. I also tried stopping alcohol, stopping caffeine, and stopping various supplements, but nothing conclusive helped. Internet searches came up with “peripheral neuropathy, no cure”.
In 2020 I also got diagnosed with autoimmune hashimotos thyroid disease. Though looking back at blood work I had probably had that for several years, but no doctor thought it was worth mention until 2020. But lab tests going back many years showed antibodies. As time went on, the flushing, heat, and redness in my feet got more frequent. I eventually bought ice socks off of Amazon to keep in my freezer, because that would usually stop a flare quickly.
In early 2020, yet again tried to search the internet with any terms I could think of for feet flushing or hot feet at night. I finally found a group talking about erythromelalgia. That sounded like exactly what was going on with me. From that group, I learned that my problem could be due to a genetic mutation, or it could be secondary to other more serious conditions like lupus. I didn’t take action as we were all in lockdown and scared to even go to a doctor. Over that year my feet became less responsive to even the ice socks.
Summer 2020 brought more setbacks as I caught Covid from an overdue eye exam. I developed daily nerve pain headaches post Covid. At first I thought it was neck tension but a couple months of chiropractor didn’t help, and then my primary dr gave me amitriptyline which helped. I also randomly developed bad face rosacea in December 2020. Once headaches controlled, and after vaccination in 2021 made me more confident to leave home, I pushed my primary dr to refer me to a cardiologist for feet flushing. It was so hard for doctors to take me seriously as the flushing never happened while at their office. I took tons of pics. The excellent cardiologist agreed I have erythromelalgia, but he also highly recommended I see a rheumatologist to rule out lupus. I cried from relief that day because someone finally took me seriously and I wasn’t crazy or just unlucky to be aging faster than normal. My rheumatologist ran a bunch of blood tests and immediately caught the b6 toxicity.
That night I threw out all drinks and supplements with b6, but my doctors all told me not to worry about b6 in foods. I saw some improvements immediately with flares becoming less intense and less frequent. Also the skin of my feet was less blotchy. I eventually realized the nutritional yeast that I used for non dairy cheese flavor also has b6 because it’s fortified. Over a couple months I ate through the last of the chicken, pork, and beef in our huge freezer, and also cut avocado and big spinach salads. I tested new recipes with tilapia, shrimp, and lamb to get accustomed to lower b6 protein meals. November 2021 I finally began eating only RDA b6 daily.
I just got my B6 test results back and I’m a mix of emotions (long post ahead/my story/some questions)I’ve been unknowingly having B6T issues on and off (mostly on) since 2003. Minor then, progressing as time went on (because I added more supplements as I felt worse thinking they could only help).
My symptoms really came to a head around May 2021. By this point, I had neuropathy in my legs (that started in 2003 as my first unusual symptom–a “water retention” feeling without visible swelling, plus heavy legs and nighttime calf cramps), new neuropathy in my arms/hands, “shards of glass/putting a cigarette out on me” nerve zaps all over my whole body, INCREDIBLE brain fog, chronic fatigue level exhaustion, horrible joint pain, etc. It came on rather suddenly and I assumed the nondescript auto-immune type issues I’ve had my entire life (that docs suspected was fibromyalgia or Psoriatic arthritis– which could still be happening on top of B6T–who knows…) were really getting bad and what started in May was the worst flare I’ve ever had. That’s when I started making appts with my doc to figure out what was happening because it was that debilitating. This flare lasted 3 months–until August.
(As an interesting aside– it started with sun sensitivity which is very unusual for me, my melanated skin never has issues with the sun. I was out in the pool/sun, got a rash, then the neurological/pain/fatigue symptoms began shortly after. At the time those symptoms seemed to point toward psoriatic arthritis but now I believe it was actually B6T).
And of course, during this time I made SURE to not miss my daily supplements thinking that would help–it likely made things worse. My doc kept asking me if I took B complex (because my symptoms sounded like a deficiency) and I’d tell her yes, not only that, I take higher doses of all these other separate Bs also. She’d say “oh, that’s great!” and never thought to test my B levels anyway. My blood tests all came back excellent except for mysterious elevated hsCRP. But we couldn’t figure out where the inflammation was coming from. All summer I’ve been trying to get to the bottom of my health flare like I’m HOUSE, lol! I was also feeling worse and worse.
I decided in August to go on a strict elimination diet to see if I could narrow down what the issue was (I also have G6PD enzyme deficiency which is triggered by diet so an elimination diet made sense to see if that was irresponsible for all these issues). Plus I committed myself to daily exercise because it’s supposed to be good for psoriatic arthritis. When I started the diet I also stopped all supplements (because some contain PG & PEG which are G6PD triggers. So are things like NSAIDs–which I took Naproxen daily for 2 weeks in July because my joint pain was getting BAD and I thought if it’s psoriatic arthritis naproxen would help inflammation. I had a HORRIBLE reaction to it which likely was from the G6PD–so all these things happening at once were really hard to sort out!).
Long story short, the first thing I added back after I was on my elimination diet for 3 weeks and feeling FANTASTIC (elimination diet/exercise coincidentally looked a lot like the B6T protocol!) were my B vitamins (including a 100mg B6). The neuropathy, joint pain, extreme fatigue, etc. came back immediately full force. That’s when I knew something was up with my supplements. I had taken a multivitamin off and on since this started in 2003, added B-complex probably 3 or 4 years ago (and I bought different brands and never checked to see how much B6 each brand had).
Then in late 2019/early 2020 I added 100mg of B6 daily. It never dawned on me to check to see if that was too much because like most people I believed the common misinformation that you pee out the B vits you don’t use. I was also taking Methyl B12 in high dose, Methyl folate, and a couple other Bs too. I’ve been taking lots of Magnesium daily since 2003 when my leg issues started thinking it would help (it also helps keep me regular). About 5 years ago I discovered electrolyte salts/salt in general and that *really* helped with my leg issue–not completely but better than anything I’d tried before (little did I know then WHY!).When those symptoms returned I started googling more about each B supplement I added back and discovered B6T which is the first thing I’ve come across that fit my ongoing symptoms to a T.
I scheduled my own B6 blood test as soon as I could and my results JUST came back today 3 times the upper limit. I’m RELIEVED that I finally figured out the bulk of my issues (I still have a couple other things going on but those symptoms are minor compared to this). But also PISSED that this has been going on for FIFTEEN YEARS! And I had no clue. No doc caught it. I’ve never been tested for any vitamin level except D. And that was just once when I asked specifically for it (that was 3 years ago– I was deficient). And I’m also upset that what we’ve all been told about Bs–you pee them out–is flat out WRONG.
I’m going to be asking my doc on my next appt in 2 weeks to test all my Bs because I was also doing high doses of 12 and folate and who knows if those are wonky too. I know the B6T protocol from reading this group (similar to how I’ve been eating with just a few minor adjustments) so I’m good there–I’m starting STAT. I also know to expect a long journey with ups and downs. I do have a couple questions, however–
- How severe is my level? It’s close to 3 times the upper limit AND I had been off of B vits for about 3 weeks prior to the test for my elimination diet (except that one day I took it & got sick). If my doc isn’t familiar with B6T I want to be able to give her a gauge of how bad this is (i.e. run of the mill B6T vs REALLY BAD. She’s a good doc & super responsive to stuff she isn’t familiar with. She listens to what I tell her and does her own research based on that–then she always ends up on the same page I am and proceeds accordingly)
- I’m thinking back to when this started in 2003. I was NOT taking B vits then. I didn’t start B complex until 5 or 6 yrs ago and B6 only in the last year and a half. But I did start low carbing then (similar to what everyone calls keto now– low carb, high fat, moderate protein). My first symptoms were the leg cramps/heavy legs that many people get eating that way. So I tried potassium, magnesium–that seemed to help everyone else. It helped me a little but not much. Although I feel great eating this way (grains & sugar don’t agree with me) the leg thing (which now I recognize as neuropathy but I didn’t then–I thought it was water retention or electrolyte imbalance or something) has been a continued problem ever since off and on whether I was strictly low carbing or off the wagon (it did seem to get MUCH better the times I feel off the wagon though). How likely is it that I became toxic from diet alone? The only sups I took then were off and on drugstore multivitamins. IDK what foods I was eating were supplemented but I was never one for vitamin drinks, super processed/fortified “health” foods, or anything like that.
So, is it possible I’m sensitive to B6 and naturally predisposed to storing a lot? If so, how would I know and how would I manage this moving forward? Should I get B6 blood tests more often? Anything else I should do or look out for? Thanks! And thanks for this group. I’ve been reading so many posts and learning so much, I would not have figured this all out had I not found you
For the past 4 months I have been suffering with an almost unbearable range of painful debilitating symptoms affecting my sensory, motor and autonomic nervous system. This includes burning (nerve pain) in my mouth and chest, small fibre neuropathy in my hands, feet and nose, low blood pressure, breathlessness, nausea, muscle fatigue and muscle wasting, insomina, anxiety and lack of thermoregulation especially at night.
I have been admitted to ED twice and had many tests – my symptoms baffling the many medical professionals who tried to diagnose me, including my own neurologist. Then, three weeks ago, thanks to my clever GP I discovered, with a simple blood test that my body was being poisoned by a toxic level of Vitamin B6.
Due to the unregulated vitamin industry I had unknowing getting huge amounts of Vitamin B6 (pyridoxine) from the Blackmores Bio Magnesium and Zinc supplements I sometimes took. I have since discovered that many other people – often extremely fit athletic types – , are suffering the same fate due to unwittingly taking supplements with up to 50mg of Vitamin B6 added. (RDA – is about 1.2mg).
Despite pyridoxine toxcity being well documented in medical journals etc, the medicos I’ve encountered really don’t understand it and don’t seem to screen for it which is also very frustrating. In fact, many are still sceptical that this is what i have.
I am angry that the vitamin industry can get away with this and am sharing my story so more people are aware of the dangers of taking a product that is totally unregulated and in the end is costing the public health system a lot of money and causing so much pain. I believe the recovery is slow and is likely to take six months or so. Please share this post as I’m certain other people may have similar unexplained symptoms.
I had zero issues prior to the vaccine. I absolutely became toxic directly after. I was wondering if a lot of the people with long term covid brain fog are b6 toxic and don’t know it.
I’m so lucky to have stumbled upon an amazon review mentioning b6 issues from a 1mg multivitamin pretty early on into me feeling so awful which is what lead me to basically harass my dr to check my b6 levels which ended up being the only thing abnormal in my extensive bloodwork. It’s so sad thinking how many people are out there that have no idea why they feel so awful.
I feel like I had an extreme inflammation response to the vaccine which lead to my b6 issues. Yea it is very sad to think how many people are walking around not knowing about their b6 toxicity with zero help post vaccine. I was dismissed and told it was anxiety at every dr prior to my discovery.
It started with extreme chest tightness 5 days after first shot it felt like a belt was being tightened around my chest it was so intense I could barely catch my breath. The dr tried to prescribe me antacids for it !!!!! With zero proof it was a heartburn issue. Everyone told me it was anxiety or a pulled muscle, etc… and pressured me into getting the second shot (funny enough I started actually feeling better and more normal the day I was supposed to receive my second shot).
After my second dose I had horrrrrrible brain fog. I couldn’t work, I couldn’t do anything. I felt like I was losing time. I couldn’t focus on trees or anything outside without extremely zoning out. I was sensitive to light and it felt like a strobe light all the time. I was in a daze. I was also lightheaded and the severe chest tightness was still there. It was just awful. I’m pretty sure I was dealing with some very low blood volume as well.
No doctor I saw had any interest in helping me since all my bloodwork came back normal even with my previous history of never going to the dr besides for routine bloodwork every few years. It wasn’t until 3 months later and I started getting these insanely horrible pressure headaches in certain spots of my head that a dr referred me to a neurologist. The neurologist recommended a multi vitamin and magnesium over the phone with zero testing. The magnesium made me feel worse and within one week of the multi, my feet were tingling and burning sooo bad.
I knew it was b6 related and begged my dr to test my b6 levels which were elevated and the only abnormal thing on my bloodwork. I have had zero help from any dr. Even the neuro tested the nerves in my feet and legs and said for sure something was going on but that was the last I saw him. He never scheduled another appt with me he had an assistant call me and she was zero help at all.
This group and the protocol has been the only help I’ve received and I’m doing sooooooo much better. I’m 8 months out since my vaccine and I can finally actually see the light at the end of the tunnel. Month 6 was where things started really getting better.
All of my (what I now know to be b6) symptoms started for me 3 days after getting the first vaccine. I had pins and needles and some pain in my feet. This eventually progressed to include heart palpitations and sensitivity to hot foot baths, magnesium, etc…
My doctors told me not to get the second dose of the vaccine for concern that it was Guillain-Barre Syndrome, so I never got it. A neurologist that I saw also wanted to prescribe anxiety meds and I declined.
My only blood result that came back out of range was ferritin so I figured that was somehow related. After taking iron for months and even getting an infusion, my symptoms suddenly started to change and re-emerge, so I asked my doctor to test my b6 after reading about someone else’s experience in a different group. Turns out my b6 was high.
I had taken different b complex vitamins with 50-100mg for months leading up to the vaccine and for a few weeks after my iron infusion, so this started to make a lot of sense. The vaccine may have been my dehydrating event that brought on my b6 symptoms.
It’s been a long 9 months and I finally feel like I might be on the right track following this protocol.
I found this website when searching B6 toxicity and i am so grateful.
My issues started last July with dizziness then numbness on right side of my face and my right eye started having double vision. I went to the eye doctor three times in 6 months and my current prescription isn’t right again. I have been to the emergency room 4 times. I stopped going anywhere and was afraid to be alone as I feared I was dying.
I have had MRI’s done and I do not have MS. I had my allergies tested and I am allergy to nothing. I had auto immune testing done and all negative. I have tried new doctors when I get the “It must be anxiety”. I went to my second neurologist and she did neuropathy testing and I didn’t have it. She did test my B6 and it was 88 when 33 or higher was HIGH. I have dealt with feeling my heart pounding which is the most uncomfortable and my nerves throughout my body feeling charged. My face is still numb. I have been prescribed Gabapentin which I only take when needed.
Since reading your website I have downloaded Cronometer and I am keeping my B6 under the RDA. I have been drinking 6 bottles of water a day and aloe juice before bed. I tried the pedialyte but zinc makes me nauseous and I did the coconut water and I had a spell not sure if that but stopped it anyway. I have started working out at the gym to work out the muscles. I am starting to feel better but I am reading it takes time.
I cleaned the kitchen this morning. A deep cleaning for a few hours and had a spell afterwards so I rested as best I could. I find that a fan blowing on my face helps. I am hoping to learn more and give my all to get through this. I was taking multivitamins along with other supplements and I quit drinking last June so not sure if that is related.
The doctors have been a lost cause except for the new neurologist and gastro doctor. I got covid in January and my stomach has been a mess. Scheduled for a endoscopy on the 39th. I have had to work a full time job through this which has been tormenting at times but I showed my husband the website and he read the blogs which were so helpful for him to understand what I am feeling and dealing with. He has watched what he read on your site play out in me. I can’t thank you enough for that. Along with working I have 80 yr old parents to care for. Just finally knowing what is going on and for my husband to now understand bc he felt helpless has been a huge help. Thank you.
I worked my entire career in healthcare and know several doctors. I would say the majority have no idea. Several doctors told me my neuropathy was from my bad back. Finally went to a neurologist who said it’s not from my back. She tested me for B6 and I was over 4 times the upper limit.
I changed a whole set of doctors because I was treated poorly and treated like I was making this stuff up. I ended up asking the new doctor to test for B6 and she told me to take my supplements every other day. I was referred to a neurologist who was aware of B6 toxicity and told me to stop completely but doesn’t realize the extent of how bad this stuff is. Protocol with hydration, exercise and lots of patience is needed to get rid of this poison. Some people heal quicker depending on their story and how much B6 got stuffed in their muscles/tissues and nerve cells. Just remind yourself this is reversible and hang in there.
5/7/22: I’ve been told I either have B6T or ALS. They told me this so I stopped all supplements about 5 days prior to B6 blood work. Then showed “ok” in blood work but on the high end. My neurologist said even at that it’s the highest she’s ever seen but still not ruling out ALS. Both options suck but at this point I’m praying for some improvement. Trying to follow the protocol. After 7 months of hell I’ll do whatever it takes. Was anyone else first told it could also be ALS? How have all of you mentally and emotionally stayed functioning?
5/10/22: I’m so grateful and excited that I’m finally crying tears of joy. I am nowhere near healed, and I know I will have set backs, but after starting this protocol this past Friday, I have had marked improvement daily. I actually am taking 1/2 the Tizanadine that I was taking. My scissor gait is much improved, the twitching tremors and spasms are about 1/10th of that they were. The Dr told me either B6T or ALS. This is proving its B6T. So even on the bad days that will come, I can remember where I was! THANK YOU!!!!
**This horror story was important to post. This member was horrified at the ALS diagnosis. The neurologist could not offer any suggestions on how to heal B6 toxicity. She found the website and Facebook group. She started following the B6T Smart Protocol with results in a few days as per her second post. This member will be following up with Mayo Clinic to confirm she does not have ALS.**
My local neurologist diagnosed me with SFN, by biopsy. She did blood work, didn’t really tell me anything just “bloodwork” no appt made for results just emails… she left me a message saying to stop b6 supplements, and that was all. I asked to go to the Neuroscience Institute and they explained b6 toxicity to me and said that it does cause all of my “delusions”, crazy pains I am feeling in my muscles and all. When I went back to my regular neuro the other day to follow up with a second MRI after a year, she told me b6 toxicity causes SFN but not the pains I am complaining about. I politely told her I am seeing another doctor about that, and he sent you back my prognosis…. I am not here to discuss this with you, I am here for a recheck MRI after the one last year. She switched gears to that and I did not want to hear another word from her about b6 toxicity cause she does not have the knowledge they have at the institute. We look to doctors for answers and half the time they are clueless. I now strongly distrust doctors in general after listening to doctors say I was delusional, depressed, insinuating I was abusing prescription medication or illegal drugs or truly crazy. After a year and a half of insanity of not being able to get any doctor to listen to me, I finally got all the answers and have been recovering since Febraury. My mental health issues were caused by accusations from doctors instead of the help and care they are supposed to give. I feel so much better with a Dr on my side and answers. I stopped praying to die.
I can’t provide answers to any of your visceral or neuro pain, but I can say that I relate to your journey. This has been such an eye opening experience for me, especially since I have a background as a critical care nurse. In the inpatient setting, it seemed much more clear: tests were timely, diagnoses were given, and procedures or medication was prescribed. This outpatient world is a different beast. We experience and report our symptoms to our GP, who may or may not order tests, may or may not refer us to specialists, the latter who may or may not have an appointment available within three months. And so, we wait. Every day feels like it’s forever, as we live in fear: fear of being awake and going to sleep, as new symptoms seem to appear almost daily. They’re scary symptoms too! Neuro pain, numbness, brain fog, visceral pain (mine is right upper quadrant), and many of you have respiratory issues! I can’t imagine. All this we live with ALONE. No help from the medical community, and since our families and loved one can’t “see” our symptoms, it’s hard for them to provide the support we need, especially because many, if not all, of our tests are negative! And to your point, Jenz, when there finally IS a test that is abnormal, B6, it almost doesn’t seem bad enough to warrant all of our symptoms. Not to mention, that we can be “blamed” for it: we were the ones who were supplementing or eating too healthy. It’s wild. This is absolutely wild. I’m so utterly thankful for this group, even though we are from all over. It is a relief to have hope again.
Below is my list of symptoms from the last two years. Most of them I recorded in 2021 and 2022, a few I added recently as new ones appeared. Almost all I had before I knew about the B6 Toxicity. As you can see I was probably also experiencing low blood volume and reacting to vasodilators before I knew what they were. Just knowing about those has now made a huge difference to how I manage my day to day symptoms.
I did experience carbon monoxide poisoning before it all started which was probably ongoing during the beginning so it was later assumed this was the cause of all my symptoms (we found out about the CM leak about 10 months after I started being sick so it could have created and perpetuated a number of dehydrating events). I do think now that the first effects of the leak was my initial dehydrating event and that the B6T then got triggered a month or so later when I took Floradix iron supplement which has B6 added. I didn’t take this or other B6 supplements continually in the last two years but looking back I see that I have taken B6 on and off for two years (B6 vitamin pills, more Floradix, Myers Cocktail IV and I was eating a lot of high B6 foods) and each time after taking them my symptoms got worse so I suspect I went through recoil and rebounds a few times in the last two years. My worst recoil was this last time that started in December 2022 after stopping a B complex in November which I took for 3 weeks. Like many others experience, my doctors, ER visits and naturopaths either didn’t know what was happening to me or gave me incorrect diagnosis and supplements. My symptoms are now improving and I seem to have started some rebound symptoms, but hard to tell I guess. It does help to know what’s possible and to hang in there and be patient with the process. I certainly have slowed down the stream of appointments I was having and all the medical bills I was accruing!
On a side note, I’ve had ME and Chronic fatigue for about 25 years so suspect I had low blood volume already perhaps. Carbon monoxide poisoning also causes Hypoxia (lack of oxygen) which causes low blood volume. When I was initially sick two years ago, we lived in Flagstaff, AZ at 7000ft elevation – I’ve learned that when you live at high elevation the body learns quickly to adapt to the low oxygen environment and low blood volume created also at high elevation and compensates for it, so I do wonder if I had low blood volume then but didn’t feel it or experience it until 6 weeks after we moved to Washington state at 200ft (we moved here last year in August 2022). That’s when the ‘gushing’ as I call it, started, or when I first ‘felt’ it and now understand it is probably the effects of low blood volume and that my body was no longer ‘compensating’.
Thank you so so much for your time you put in to help us all! I have learned so much from the website and facebook page and it is such a relief to have a diagnosis and ways to get better!
- Change in blood pressure depending on time of day
- Extreme dizziness/feeling about to pass out, especially after eating
- Nausea (eating bananas when I feel like eating)
- Extreme Diarrhea (minimum 3 times in a row)
- Itchy skin
- Heart racing/blood racing especially in night
- Can’t go to sleep some nights
- Tingling in spine and back of neck into the head
- Pins and needles, especially in sleep or in bed when laid down – worse in hands and arms
- Breathing issues – feels labored
- Eyes more blurred and feel like they have glass or cocktail sticks in them
- Dry mouth
- Dry eyes
- Swallowing is hard sometimes. Feels like throat is closing
- Teeth ache but different parts on different days so not toothache
- Fatigue especially in late afternoons
- Experience of loud noises are painful and noticed as vibration in body before I hear it audibly
- Gradual loss in weight and muscle mass. Lost 60lbs
- Swollen lymph nodes
- Spleen pain
- Stomach pains/soreness and pain in stomach/small intestine
- More sensitive to everything environmental (dust, pollen, dryness, chemicals, cleaning products, car fumes etc)
- Seem to react to detoxing things too like Epsom salts, sage baths etc
- Pain in chest – top of left breast
- Heart palpitations
- Frequent urination in night
- Regular UTIs/bladder pain
- Burning soles of feet
- Hypoglycemia (low blood sugar)
- Gushing feeling around body – feels like water? Blood? Worse after food and in feet/calves and groin and arms
- No sweating
- High calcium
- Low potassium
- Mild inflammation markers in blood work
- Extreme Fatigue
- Nerve pain or pain zaps in random places at random times
- Hair thinning
- Temperature sensitivity (hot and cold)
- Anxiety is intense at times. Not sure if physical or because of mental stress of coping with a sickness
- Feel fatigued and exhausted after a hot bath
- Feel overwhelmed after a sauna and red
- Weird brain/mental perception feeling like hand is in different place to where I think it is
- Can’t stomach high Vitamin C or other supplements etc
- Seem worse after certain foods – trying different diets – can’t figure out which diet is best. Can’t see the pattern
- Seem more fatigued after potatoes, roast veggies, salmon etc. Too many carbs?
- Can’t work out if coffee helps or harms
- Massage helps but feel exhausted after
- Colonics helped so is this food related?
- Periods stopped but is that menopause and a separate process to this?
I took seriously ill in May. My story is long and complicated. Tonight…again..my legs, my arms and torso went totally numb. The numbness went higher up my body tonight. I feel compressed. Heavy. This is very scary. I seem to go to sleep and I awake with this numb body 2 hours later. I feel overheated at the same time. I move… I still feel ‘odd’ but the numbness improves, though I still feel heavy, nauseated, unwell.
Headaches got worse today. My muscles are sore to touch and my body is weak and has a ‘wasted’ feeling. I don’t know what to do. I am worsening. It’s not anxiety though I am starting to feel anxious due to the situation. I am either going to die or be paralyzed soon and that is no exaggeration.
What the hell is happening to me? I feel like I’ve been poisoned. People don’t see how serious my situation seems to be. Is my body going into autonomic failure?
Wanted to post my experience, especially so I can see where I came from as I continue to heal.
It all started for me late last year 2022/ early 2023. Something was really wrong with me health wise and I knew I needed to get help but I thought I would eventually get better. I just started a new job in April 2022 and it was a lot more responsibilities and stress. However my anxiety level was extremely high. I have always dealt with anxiety but I have never experienced the kind of anxiety that I have been going through as of late. I would lay down to go to sleep at night and my ears would start ringing (usually this meant an attack was about to occur) and then my vision would start to narrow and I would feel like I was about to lose consciousness, mind you as I was laying in bed. I would jump up as fast as I could and get up and walk around the house. Strangely enough walking helped me but it always felt like I was on the verge of passing out. This happened sporadically off and on for several nights. It’s definitely the most intense thing I have ever gone through.
There were several days where I would be walking my dog and then all of a sudden my vision would go blurry and I would feel extremely strange. (I believe now what was happening was my blood pressure would drop randomly)
In February during the day I was working at home on the computer and all of a sudden an intense heat (like someone was holding a blow torch to my skin) radiated from my chest up my neck. This of course sent me into a full on panic. I immediately went to lay down in the bed but this didn’t help. my legs all of a sudden started feeling insanely hot like they were filling up with hot liquid. I also started to have pains under my arms. I finally decided that I needed to go to the E.R. My spouse drove me there and when I got there my whole body was trembling/quivering and I had no control. At the E.R. They did blood work and Did an ECG and EKG. They said my heart was perfectly healthy. They even tested me for a protein called troponin to see if I had recently had a heart attack. Everything came back good.
They told me everything was fine and sent me back home. They did have me wear a heart monitor for two weeks. Which I did have several times where I pressed the notification button. After two weeks I sent that back to a cardiologist for review. Every time I pressed the button to notify that I was experiencing symptoms they said my heart rhythm was completely normal. So after months of thinking I was having heart issues that was ruled out.
I had already been struggling with this overall bad feeling for months. Some days were ok and some were just awful. I had really began to think that I was crazy and losing my mind. Thinking that this new job and the stress were all just too much and maybe the possible cause for my downward trend.
A few days after the ER visit it seemed as if my blurry vision was no longer just at certain times it was pretty constant. One time I went to eat with ny spouse and was walking and was carrying a tea from dinner. I had to hand him my tea because my hand had become so weak that I felt I was about to drop the tea and I had to sit down because I got the feeling I was about to drop. A few days, maybe a week or two later I started experiencing an insanely odd feeling I had never experienced before
brain fog, but it was baaaad. I think I even started disassociating with myself. I felt like nothing was real and sometimes as if I was out of body (depersonalization) of sorts. This intense brain fog / depersonalization was all the time now. Also I literally felt dizzy all the time.
My absolute breaking point was one night when I woke up in the middle of the night gasping for air again and my whole body was tingling. Which I forgot to mention but this had been happening in my arms and legs now for several months and even in my face for a few weeks. The tinnitus was there, the vision problems were there, the dizziness and feeling of losing consciousness. This time the heat feeling shot up the back of my neck into my head and the tingling started in my head now. At this point it was like 4am. I woke up my spouse to be with me because I felt as if I was about to die. I really wanted to go to the ER again but was literally trying my best not to because this would have been the second time I have gone only to be told I am perfectly normal. ER visits are expensive and I am already 30k in on ER visits. I was trying to distract myself and Daniel was trying his best to calm me down.
All these symptoms paired with the worst anxiety that I have ever experienced was literally enough to break any mentally solid individual. I would have the worst thoughts too: one time I felt like I was being urged to go do something in public. When I got there I had convinced myself that the reason I felt the urge to go into public is because I was literally about to die and I needed to be in public and not alone in my house so someone could help me. These are the kinds of thoughts and experiences I was dealing with ALL the time. It was not natural.
At this point I had excepted the fact that I was dying and something seriously was wrong with me. Let me just say everything I have been through in the last few months has changed me on a mental, physical and spiritual level.
Well I went to see my primary and told him all my symptoms. He didn’t really know what to think of it. And he even was worried that it was Guillain Barre syndrome. This really scared me when he told me that but I tried to stay strong. After doing some research on the topic I quickly ruled that out though. He did tell me to get an appt with a neurologist ASAP.
After many days of hitting a brick wall on trying to get an appt scheduled I finally was able to get into a neurologist only because of a friend that new a friend (what has our healthcare system become?)
I go to the neurologist and he does his tests and he mentions that he wants to do a series of blood tests on me including testing my B vitamins. He casually mentions that sometimes too much B6 can cause neuropathy and he wants to just rule that out.
The normal range for the B6 test at this lab was 2.1 – 21.7. When I got my results back mine was 110.2. Which is over 5x the max limit. My neurologist called me and told me to stop supplementing with all B6.
I was only taking a multi vitamin with 50 mg b6 and that was enough to send me in this downward spiral. I was literally poisoning myself thinking that I was helping my body recover.
Just a week and a half into my journey and
My brain fog is now completely gone, depersonalization is completely gone, my neuropathy is pretty much constant in arms and legs but I know and am hoping that with time the nerves will be repaired. Muscle weakness especially in my hands is not as bad and blurry vision is getting better. So I am healing but it’s just taking time and I am trying to learn what helps and what hurts.
Thank you Beth for this incredible resource. it has already brought me so much hope when I was in such despair.
Just diagnosed. So glad my doctor checked my B6 level when I came to him with my concerning symptoms. It took a week and a half to get the result back, but it was clear as day. My doctor said he hadn’t seen a result as high as mine before and the lab even commented on it being ‘markedly elevated’ in their report! The reference range on the report says 20-190 nmol/L. My level is 7830 nmol/L!
I’ve had a lot of health issues this year, (Crohn’s diagnosis – active flare, Low iron, Low B12, Cytomegalovirus diagnosis – active secondary flare, bronchiolitis, hives type rash and MDD diagnosis) so I’d been able to assign my symptoms to different illnesses or medication side effects, but then I had a massive setback two weeks ago and things began to stick out. I suddenly could barely move my legs and my friend had to come rescue me and drive me home. This was followed by another episode two days later where the same thing happened with both my legs, and arms for a while, and I started having intense uncontrollable muscle spasms among many other things, which sent me off to the hospital.
At the hospital I struggled to engage the muscles to release my bladder contents, but after strenuous effort I was able to relieve myself. Plenty of sensation symptoms, sensitivity to light and a headache. Flushed cheeks, hot hands, dry throat, hoarse voice. No temperature; all monitoring said I was fine. The blood and urine tests, that they did at the hospital, also turned up nothing!
That night, still not able to walk like normal, the doctors told me it was likely just anxiety and there was no point in me staying in the hospital to wait for an MRI that would probably show nothing was wrong. This sent me into a depressive episode, as I felt like they didn’t believe me. After my sudden shift in mental state, they ended up making me stay overnight. As I slept my feet felt really hot, like they have often been feeling in the last few months. I also got a painful cramp in my left upper thigh.
With a bit of mobility recovered, but still affected, I came home the next morning. I kept searching all my symptoms trying to find an answer, because I didn’t believe I was causing it all. I followed up with my gastroenterologist and my GP and got booked in for an MRI on both my brain and spine. They were done last Friday and I got the results on Monday. They were normal. I felt no closer to an answer. Then I saw my GP again yesterday prepared to go through my list of further possibilities and he was so happy to tell me that he knew exactly what is wrong with me! I asked him if he was kidding twice, because it was such a departure from what I was expecting!
So much relief to have a name for what I’m experiencing!
I was unaware there was 60.8mg of B6 total in a multivitamin and 60mg in a magnesium tablet that I’d been taking daily for 3 months since my Crohn’s/CMV/Allergic reaction hospital visit back in May. I thought I was doing the right thing since they’d given me different supplements during my stay and I was still experiencing weakness and fatigue. I had no knowledge of what B6 was or was for! Interestingly though, I had a similar struggle to walk, though not as intense, back in March, which makes me think it’s possible my levels were high even before this latest stint. I had taken some of the multivitamin for a while previous to this, but not sure exactly when and for how long.
In 2022, I was diagnosed with ADHD and started on meds for it. I dropped about 6kg in weight, pushing me just into the underweight category. With my Crohn’s diagnosis, I figured it was a bit of both that caused the weight loss, but it’s all really hard to untangle now. Luckily, I have managed to put the weight back on within the last few months, so at least that’s one less concern currently, but the struggle with insomnia and interrupted sleep from night sweats, hot feet, nightmares and sudden gasps for breath have really sucked.
At the end of this post I guess my biggest question is how high was your B6 level when you were diagnosed? (if you’ve been tested) Obviously I’m well and truly done with the vitamins, but my doctor said to expect it will take a while to recover. With a level that’s 41x the upper reference range and 391x the lower reference range, I’m hoping that by some miracle I don’t have lasting damage and can return to my more regular life sooner rather than later, because I am so sick of being sick and want to get back to doing what I love, performing, without the threat of my legs giving out! Thanks for reading.
Hi everybody! I’m Christopher and a new member here. I just recently found the website and this group and just wanted to say I’m very thankful to have found this, and I am feeling very hopeful about the future now that I found a support group like this and not feeling so alone. Here’s a bit of my story (it’s long, sorry), and a question to the group at the end if you wanna skip ahead haha.
I just found out I had B6 toxicity in April of this year, after suffering with unknown symptoms and basically hell of a life now for 4 years. I’m a touring musician and a professional actor, but for my day job since my other jobs don’t pay all the bills yet, I’m a safety consultant, industrial hygienist, and here’s the kicker, an occupational toxicologist. I study the effects of workplace hazards and chemical exposure on employees. Never put two and two together on B6 toxicity and a neurotoxin I take daily to be the cause of all my symptoms and issues. I thought it was something mechanical, like a pinched nerve in my neck from running marathons and head-banging at shows. Im 4 months into my detox and already 80% of my worst symptoms are gone.
My story is below, if you choose to read it lol. Or if it can help anyone else.
In 2018 I started having random symptoms that were minor (tingly feet, sore hands, sciatica), but blew them off as stress of my schedule, touring and from running and exercising. But beginning of 2019 I got MS like symptoms is all I could explain to my docs. Full body tremors like I was hypothermic got me scared, and then had a bout symptoms that started this horrible journey. Felt like someone poured lava down my back and spine, coordination issues, brain fog, episodes of sleep apnea and asthma like attacks, slight left face numbness (just in the skin), neuropathy in feet and hands and joint pain everywhere.
Long story less long…after 3 neurologists, multiple MRIs, CT scans, nerve conduction studies, heart tests, blood tests for autoimmune diseases, requests to Mayo Clinic, etc etc. I was left being told by one neurologist it was stress and alcoholism (I’m not an alcoholic, but she said the neuropathy was from alcohol), one doc saying I had some slight cervical compression but only explains half my symptoms and I’ll have to learn to live with this, another saying I had sleep apnea and get a CPAP, and another saying it’s probably lack of vitamins and I need to take more so they prescribed B12 injections, B-Complex, diet of chicken and fish and alpha lipoic acid. And I was left to my own accord and trying to find a solution.
After trial and error after another huge flare up in 2020, I finally found that chiropractor treatment, neck traction (doing it myself with a y strap device) and massage gave me some relief. But I loaded up on vitamins and supplements and kept pushing myself and would get random bouts of flare ups and then weeks of no symptoms. But was always told “sucks getting older huh”
Finally, in November of 2022 my symptoms got worse and more autonomic nervous system involved. I got anxiety and panic attacks, my resting pulse would get erratic and be 90-95 sitting on the couch, choking and swallowing issues, extreme GERD, my blood pressure was erratic and would spike to 165/90 and caused me to go to the ED twice when it got to 180/98. Cardiology tests and nuke tests all showed perfect, healthy heart. All other tests normal. Then in March during a flight home from peru, I got neuropathy bad in my feet and my legs started the numbness that lasted weeks. So I asked my PCP for a new neurologist. The savor of a neurologist my PCP sent me to read my MRI, all my records and ordered a huge blood screen (7 vials). Came back back normal except with toxic levels of B6. Results were over 200 on a 1-20 normal scale. I added up my intake of B6 and I was ingesting over 600% the RDA daily for probably years. Immediately came off all B6 from supplements, preworkout, etc. Finally all the scary symptoms have mostly stopped. BP is normal for months, no anxiety or panic attacks for months now, all that’s left is neuropathy and bouts of numbness and heavy arm and legs which I now know is rebound and was probably recoil. As a toxicologist, I’m frustrated with myself that I never figured out it was something I was taking. I thought it was mechanical, that I messed my spine and neck up running and headbanging at shows. But hindsight 20/20, it all makes sense and fits now. And after reading through the website and this group…I absolutely fit in with B6T.
I just started this B6 protocol this week as I just found the websites and already I feel better. But more so, my hope and motivation are through the roof since I found this group. I thought I was all alone, and I had little hope in the future. I was scared I’d lose body functions if it got worse and basically shut down on life this year. I quit working out a month ago scared of make it worse. But I’m so relieved to know there is hope. Even if it takes two years, but that it’s not going to get worse and could get better helps. So THANK YOU ALL!!! I started the hydration, got on Cronometer and started back exercising yesterday. So again, thank you group and everyone.
My question…I seem to have flare ups, or rebound, when I fly long flights or sit for long periods. Two 3+ hour flights home caused bad neuropathy and numbness for a week or more. And one session sitting in a studio chair for hours caused 3 weeks of issues. Does anyone else experience that? Or things that cause it?
Also, going to a chiropractor and massage seems to greatly help relieve bad flare ups after a couple days. Does that help anyone else?